#CleftAware

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????

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!!!

Our Week In Review....

I'm about as impressed as Ben looks.

It really and truly has been one of "those" weeks. To be fair it has been more than a week but my patients and sanity have been tested none the less.

It all started with Victoria coming home with a NASTY cold. It lasted for about a week, but her throat was so sore she could hardly swallow. Harry was the next to get sick. He was worse than his sister with a high fever and refusing to eat or drink. After the cold seemed to start letting up the poor kid ended up with chicken pox! He (and I ) were miserable! He would bring me the tube of anti itch cream and say "mama fix it." Oh how I wish I could have.

Once Harry was well on the mend, Ben ended up with the cold. PRS and a cold is never a good mix. Even though Ben has had his jaw corrected he still gets pretty sick with any normal childhood thing. His cold and fever held on for days. He refused to eat, he wouldn't drink and even getting his medications in him were a challenge. He was having trouble breathing and went back to sleeping on his front for a few days.

As I am sure you are all aware Ben has struggled with his weight gain. We hit another plateau in the summer and really struggled to snap him out of it. Finally between August and the first of November he was back where he needed to be. This illness however had his weight drop back below what it was in the end of August. I am so frustrated! Despite syringe feeds and to ups with water and Pedialyte he struggles. I feel like I should be doing more but have no idea what.

He was miserable for days, the Saturday things went from bad to worse. He awoke screaming. He started holding his ear and we were off to the ER. Unfortunately it was too late, his ear drum had perforated. This is common in cleft and PRS kids due to the inability for fluid build up to drain. The doctor assured me that there was nothing more I could have done, but I still feel like dirt over it. The doctor told us that depending on where the perforation was it is most likely a good thing as it will make him more comfortable and give the antibiotics a chance to work. The bad news is he could not see the perforation. This means more follow up with Dr. Hong at the IWK, and keeping our fingers crossed it won't affect his long term hearing. Again frustrated.

Things are looking up and we are almost a week into the antibiotic. He still isn't himself but is doing better at least.

Lets hope this week is a better one!

Benny Bean!!

Don't I look great??

Clinic Day

Today was our marathon clinic day with Ben at the IWK. Overall the doctors are very pleased with how well Benjamin has been doing as of late.

Plastics/Cleft Palate team was our first stop. Ben has gained weight and grown well. The surgeon is happy to proceed with his palate closure. The wide u shaped cleft has narrowed and they feel that now is the time to act. Dr. Bezhuly is arranging a preadmission visit and scheduling the surgery for right away. The way he is talking I am thinking between now and by the end of January at the latest.

ENT was next. Dr. Hong was please with his ears. Both ears were free of fluid and no signs of infection. All of Ben's hearing screens have come back excellent and he has only had a few infections. Over all Dr. Hong thinks we will be able to avoid having tubes placed. As long as Ben's next hearing screen is clear, and we can avoid infections we should be okay. The plan is still to have a really good look in his ears when he is under anesthetic for his palate repair and decide then. Regardless he will clean out Ben's ears on the day of surgery. Fingers crossed.

Today we met Ben's pediatric dentist. It really wasn't anything more than an introduction and how the dentistry/orthodontic service will be involved with Ben in the years to come. His (2) teeth are fine, which we figured they would be. We were prepared about the issues with a cleft palate and teeth. Then with the complications of the jaw distraction surgery and his teeth. There will be involvement from a pediatric orthodontist prior to his third birthday. All issues will be seen to right away. Again the talk was around surgeries that will be coming up over the next decades until he reaches adulthood. In the end he will have the best set of teeth around I'd bet!

It was hard to be back in the hospital for that long. I have made it a point to make sure I am in and out when I go by myself. Today where Ash and I were there together and we had Harrison it really brought the past year. It has brought the reality of being back in the hospital with Ben again...and reliving it all over again. The fact we are going into Christmas doesn't help and just brings EVERYTHING back!

Here we go again....Sigh

So...

...we are still waiting to see what the final word on the PICC line is.

The radiologist was able to see it (FINALLY) BUT it isn't down all the way where they would like it. This may or may not be a problem, as Ben only needs it for antibiotics and not chemo nor TPN.

The doctors are supposed to make up their minds this afternoon so that the PICC can be tried.

The plan is IF we can use the PICC line as placed now to start the paperwork to get us HOME!!

I will be doing almost all the care myself however we will have to get private nursing care as well, and that may take a little bit of arranging.

There is no definite plan but things are starting to move in the home direction. Even though we are going home...the next 6-8 weeks are going to be really hard I think.

I will update more later when I know more.

I am slowly going CRAZY!!!

Today was a waste. Well not entirely but most of it was.

We were SUPPOSED to take Ben downstairs for a Bone scan...he was SUPPOSED to have and MRI and he was SUPPOSED to have 2 sets of repeat labs done.

It is 1730 and he has had 1 set of labs. Yup that's it ONE freaking set of labs!!!!!

The other tests were cancelled. They had Ben fast, had him dressed and changed, a new IV placed and everything. Once we got downstairs the radiologist decided it would be a pointless series of tests since he is so close post op and one set of tests had already been done. So they decided to wait and call ENT. ENT decided to cancel the tests until after we saw ID(infectious diseases)/Immunology.

Once we eventually saw ID/Immunology and they asked the same questions I have already answered  1,000,001 times, they decided.....(DRUM ROLL PLEASE)....to do the freaking bone scan and MRI. However because it was 1530 and Ben had eaten and DI was really busy we would have to wait until tomorrow. So we get to do this all over again tomorrow. Whoop dee freaking DO!

Dr. Mailman (the ID/immunology guy) isn't really sure what is going on. Because bone infections do not behave like other infections (mostly due to blood  supply mechanics) they can fester a long time before a positive diagnosis. He things it is reasonable to assume that this is a real possibility. However no one is jumping to start antibiotics because once started, the antibiotics will be fairly long term. With this carries the risk of Ben having an active C. Diff infection, which to a little guy like him is very serious. So right now they are fighting over how to proceed. Apparently if the tests tomorrow come back inconclusive there is another more specific test that takes 2 days to complete. Not much information was given to me on that but that is another possibility. Dr. Mailman has not ruled out the idea that it could be some other secondary condition to Ben's Pierre Robin. Many of the other conditions cause arthritic changes that could result in the elevated inflammatory markers and would explain his pain. The new things that came up from this consult were as follows;

• Labs to be repeated to follow inflammatory markers, as well as his WBC and CBC results. Urine to be sent as well for testing.
• The bone scan, MRI and possible other 2 day test (that has yet to be named)
• Consult with Cardiology (apparently the inflammatory markers with the WBC levels can indicated heart issues) more than likely tomorrow as it is late now
• Consult with nephrology to make sure nothing is up with his kidneys ( a common problem with Pierre Robin babies) 
• Consult with genetics, again
• Consult pain services to asses pain control
• Consult nutrition services (although not sure why as his weight is great)

So to sum up. I know NOTHING more than this morning. To be honest if anything the longer we are here the more questions that are brought up. Hopefully this mystery will be over soon.

I want to go home :(

Admission Day 3....

Yesterday was a bit exhausting. Most of it was spent waiting, although it wasn't really clear what we were waiting for.

Plastics and ENT were in again and decided yet more blood work would be needed. At supper time our nurse, Stacey, came in with another plan. More scans tomorrow, repeat labs and a consult with ID/Immunology. I had ENT recheck his ears since he was holding them. I didn't figure there was much point being admitted if it was a simple ear infection. After all babies/children with clefts are at risk for more ear infections and fluid build up. ENT took him downstairs to the clinic and had a good look with more specialized equipment. He saw no sign of infection, a tiny bit of fluid which he felt was insignificant and cleaned out Ben's ears since Ben was being so cooperative. So no infection and super clean ears...not really what I had wanted. At least with an ear infection we could have gone home.

I wondered why we had yet to start IV antibiotics since it looked like that was where this was heading yesterday morning. The poor nurse really couldn't help much. She didn't have the labs to review and all the information she had from the doctors is that his WBC didn't appear to point to infection although it was abnormal (I was confused as to what that means exactly) but all his other inflammation markers are "sky high". So for now the plan was to wait, watch and make attempts to control pain. The plus side is the aspirate from the lump was negative for infection so at least it isn't an abscess. Hopefully it is just scar tissue.

The pain control hasn't been great if I am honest. From his last exam at 1500 to 2320 last night he was so uncomfortable. He would scream, hold his jaw and ear, finally pass out from exhaustion only to wake a few minutes later screaming uncontrollably again. Our nurse over night, Amanda, tried the normal Advil and Tylenol protocol which did pretty much nothing. Amanda came in and allowed me to go downstairs to get a drink and some food since I had been in the room all day. She noticed he was clearly in pain and not just fussy. A late night consult with an ENT resident, whom to be honest looked scared to death of poor little screaming Ben, ordered Morphine. This allowed enough pain relief for sleep. He continued to moan and sob off and on all night in his sleep but he was able to rest.

Concerns are that it is early osteomyletis which hasn't yet taken hold as he was on strong antibiotics for so long, some other infection starting somewhere, some other disease process or genetic condition. There is also the possibility they won't find out what is causing it and we will have loads of follow up to try and figure it out.

The doctors aren't yet comfortable to send us home. Perhaps once they labs and new scans are in they may change their mind and let us go tonight or tomorrow morning. They seem to want answers as badly as I do.

For now Ben is back nothing by mouth. He will need to be sedated for his bone scan and MRI. The plan is to head downstairs at 11am for they dye injection then come back up here to wait for him to be sedated.

I will hopefully have more to update later on. Fingers crossed all goes well.

Looks like we're staying

I honestly thought we'd go home today. While Ben is still very uncomfortable, and had a very LONG night... his fever is down. He has had numerous X rays and other tests. I figured we would go home to wait and see rather than wait here. That however is not the plan.

While no one is coming right out and saying what is going on, I'm thinking osteomyleitis. Or rather I am thinking that is what the doctors are thinking it is what it is. Both ENT and Plastics have been in today. More blood cultures were sent. It also looks like Ben will be having a bone scan, ultrasound and another MRI. Kind of sounds like that is what they are thinking.

Right now we are busy "waiting and seeing".....so for now we are staying...*sigh*

Less than 12 hours

The final count down is on. In less than 12 hours Ben will be back in the operating theater for the second part of his mandibular distraction surgery.

It will be a relief to get rid of that external hardware, and the internal hardware too for that matter. However at the same time I am dreading it.

This time I am on my own. I don't have anyway to wait with. No one to distract me to keep me from watching the second hand on the clock as it seems to be stuck in the same spot.

While I know these doctors are experienced and more than capable at what they do, there is always the fear of the unknown. Any time someone has an operation there is risk, even if it is small. But lets face it...so far odds haven't meant much to us.

This is a bit earlier than what Dr. Hong had wanted to remove the device. He said the optimum time frame for the bone to ossify is 10+ weeks. We are only at 9 weeks. With all of his infections and pain, I can't help but worry what they may find when they get in there and what that will mean for Ben's course of treatment. Also there is the worry of post op infections again. Ben has been on antibiotics 8 of the 10 weeks post op already with only a few days break here and there. Every time the antibiotics were stopped the infection came back full force. It has been a nightmare and I hope this surgery will be the end of it! I worry about his breathing, I mean Pierre Robin babies are noted for breathing issues galore!! That with anesthesia can be a recipe for disaster. Nothing went wrong last time and his breathing was horrible so really the odds are not for anything happening, still given our track record I'd be a fool to dismiss it.

Then there is the feeding issues. Babies with Pierre Robin often have ongoing feeding issues. I have noticed even with just the infection that Ben doesn't take what he should at a given feed and I have to pretty much sit with him all day forcing him to eat, what he can, whenever he can. Luckily doing this until the infection started to become in control again allowed him to continue gaining weight and avoid another NG tube and pump feedings. I HOPE that his pain control is better this time and that he won't be so sleepy for so long. That his feeds can go back to normal and within a few days be home...or at least to my parents place.

I really should try to sleep but I am not sure I am going to be able to. Our room in Ronald McDonald House is in the basement, and I believe we are right below the toy area, given the thumping and banging, and other bizarre noises coming from above. Since Ben is asleep in his car seat I may take him in the bathroom with me so I can have a shower, since I believe for the first time since I arrived hours ago, the bathroom is free. The house isn't the same without our friends here. I miss Jeff and Cherlyn. This place just isn't they same without them. There was warm food waiting, and loads of friendly people, yet I wanted the comfort of a couple familiar faces and good friends.

I will try to update as much as I can tomorrow. Hopefully as things happen, since I am alone and need to keep my mind occupied so I don't end up admitted to the psychiatric ward.

T-11.5 hours....and Ben will be in the OR...Here we go again.

Long Week...Post Op infection Picture...

I think time has actually stopped!

This week is going on forever! I just want to go home!!!!

Ben's infection is finally starting to clear after 4 days of IV antibiotics. Even though the picture still makes the sites look angry and down right nasty, it is a million times better than what it was! Auntie ACE this picture is for you, by the way! I emailed it to you this morning but just in case you don't get it, I thought I would put it on here as well.

As far as pain control, Ben is on a whole cocktail of medications. The morphine seems to be working quite well in addition to his IV anti-inflammatory. The poor kid hasn't had much sleep so it is a blessing that the medications force him to sleep.

His feeds are going well and this morning he was up to 4.672 Kg. The NG is long gone and all feeds are more or less on demand by mouth.

Child Life brought in a bouncy chair for Ben to use, since he can now sit up and enjoys looking around. Child Life also arranged a visit from Buddington the therapeutic clown, for Harrison. Harrison loved watching the clown blow bubbles and sing songs with him.

We spent Valentines day in here with Ben and Harrison. Ashley got a Chinese takeaway and we watched TV and played with the boys. Romantic AND exciting no??

The decision was made this morning to keep turning the screws at least one more day and to "hang on to us" until Ben's pain is being managed a bit better, not to mention the infection needs to clear a bit more.

I just want to go home! It will be so nice to put Ben in a regular car seat and drive off to the normal world and be able to stop feeling like a permanent hospital resident!

Just think in a few weeks we will be readmitted to have the hardware remove and all this will start again....OH JOY!

Road Block

Poor little Ben has been through so much this week already, and now a minor road block.

Ben started being out of sorts late day yesterday. His pain meds didn't seem to be doing much for him. His anti-inflammatory (Toradol) was discontinued in the morning so I thought maybe that was why.

Ben spent most of the day awake but not himself. Dr.Hong came in and turned the screws while Ashley was with him. He really didn't seem that bad even though he didn't seem comfortable.

After Ashley and Harrison left for Ronald McDonald House, I sat with Ben watching TV. I noticed that he kept trying to rub his NG tube out and was hitting his hardware and incision. The sound he was making can only be described as something between a whimper and a yelp. I notice everything looked really red. I tried to pass it off as irritation where the screws had been turned not long before. Within the hour I noticed there was some drainage from around his right external screw. I was concerned about infection, so I ring the nurse. She was able to start ibuprofen and would leave a "note" for the doctors to have a look at it in the morning.

There was a concern about infection from the doctors stand point as well. Ben has been started on IV antibiotics. Dr Hong said he would also make arrangements for some additional IV pain medication although that hasn't started yet.

Hopefully after a couple more days the turning process will be complete and the infection will be under control. It certainly isn't a bad infection however that's not to say if it was let go it couldn't become one. Fingers crossed this will all be behind us soon.

A Long Night

Ben had a long night. He just couldn't settle to sleep. His sleep patterns are all out of sorts from being medically kept asleep for days. Plus every time his hand touched the external hardware or any part of his jaw or cheek he would startle, wake and obviously be in pain.

While this went on from 11pm until 4:30am we are slowly getting Ben back into his routine. At 9:30am we discontinued his continuous feeds and at 10:30am we offered Ben his first bottle post op. He loved it and did so well! We only offered 2 ounces but he sucked them back far better than he ever did before. No laboured breathing, no coughing or chocking and no stopping. He truly is a new little man.

The nurse found him a mobile and fell asleep for his nap by himself watching the little fish spin around.

Some pictures of a sight I am NEVER going to get tired of...Ben sleeping on his back!!!


My Benny Bear Sleeping:

And again:

With his mobile:

I have his hardware covered with a terrycloth bib so it isn't catching and it seems to be helping to keep him comfy:

AND THE BEST PART OF ALL.........

His O2 sats are 100 and his heart rate is 117!!! This surgery, as hard as it is/was, has been an absolute miracle.

Now to get rid of the NG and get ourselves home!

This is it...Surgery is TODAY...

This is it...we made it. We have survived the week.

In a little less than four hours, Ben will be taken into the OR and the start of his next journey will begin.

He is sleeping so peacefully at the minute, but I just want to wake him up, pick him up and hug him to bits. He looks so small laying on that bed I am not sure how I am mentally going to handle having him whisked away to surgery.

I managed to get some sleep last night but not a lot. I am nervous and scared for him. I wish I could be the one to do it for him.

I am assured the end results will more than make up for this, however right now I am not so sure.

I can't believe that we've made it to today, the next 12 hours are going to drag on for ever.

Today is it...SURGERY in 3.5 hours....

1 More Day....

We are one day away from the big surgery.

Today was all about getting ready. Scheduling the feeds to stop, starting IV's and blood work.

Ben's weight was up again, to 4.375kg. They also took his height for only the second time since admission. He has grown a lot and is up to 57.5 cm.

The IV looks worse than it is. Ben's arm is boarded to keep it in the right spot but makes it impossible to lay him down and keep him comfortable. The actual IV for hydration will begin through the night but at least that is one trauma over.

I went for the tour of the PICU today. At least it seems a bit quieter than the NICU. We aren't sure how long Ben will be in ICU for but we know at least a few days. As much as I don't care where in the PICU we go I am secretly hoping for the spot by the one and only window. I think it would make being in there far more bearable. I was shown where his ventilator will go along with what all the other monitors are and where his IV pumps will be placed. I was reminded he will be medically paralyzed to keep everything in place and to be prepared to find a very pale, and roughed up looking little boy tomorrow. The OR is booked from 10am to 3pm but I have already been warned it may take longer. I was given a pamphlet on the PICU rules and all the ins and outs. I was also given a parent journal to use, in it was already written the charge nurse's name that will be on tomorrow and the doctor that will be responsible for Ben in the PICU.

We are down to one day. I can't believe it is this close. The waiting is insanely hard. Part of me wants to tell them to just forget it and the other part just wants them to get it over with now. I can't quite wrap my head around just how much this is going to change Ben's life, and ours too for that matter.

1 more day....just 1 more LONG day...

2 Days.....

We are down to the last 2 days before surgery.

Not much happened today since it is a weekend.

Mostly residents came in to see if we were alright.

There was a mix up with the order entry and the concentrate that Ben's milk is being fortified with was cancelled and the floor ran out. It took over 12 hours to fix. Turns out the wrong order was cancelled and then the formula room was left trying to figure out exactly what it is we have Ben on now.

Ben's weight is up again 4.360 Kg (4360g). I wonder what he would be up to had the fortification actually been done correctly the past few days.

Tomorrow I am sure will be difficult. Watching everyone start getting Ben ready for surgery. Stopping his feeds, starting the IV's and changing him from his normal clothes to the hospital wear. Blood work has been ordered for tomorrow for blood typing. I also had to do a short questionnaire on weather Ben had blood products before, any transfusions and reactions. That kind of thing. Luckily no...and hopefully it will stay that way!

Only 2 more days...the waiting is getting to me now.

T-2 days....

3 Days...

We are down to 3 days before Ben's surgery...it doesn't quite seem possible.

The sleep deprivation is getting to me. I have held it together until now but I am right on the edge of a breakdown.

Today was weird anyway. Things started with an ENT resident telling us the Bronchoscopy will be done on Monday after Ben's airway is secured and prior to the big jaw distraction surgery. He then mumbled something about Ben's palate repair and left.

The pediatric team came in for a social visit. They have become more like Ben's personal cheerleaders more than doctors.

Dr Hong was in and gave us the big "talk" around surgery and what to expect. Most of it were things we had already gone over. He went over complications and chances of failure. I know they are things he has to say but thinking Ben is going to go through all that and then not have it do anything is heartbreaking. I signed the consent and put it out of my mind.

Social work checked in but really, aside from scanning the medical letters for Ashley, they have really done all they could do for us.

I am burnt out...I want this journey to be behind us.

T- 3 day.....

Not long now...

5 Days

Only 5 more days....

Today has been hard. Not because anything happened so much as that everything is really starting to get to me. I haven't had proper sleep in ages, Ashley and Harrison have colds and have been in the valley since last Thursday night and I haven't left this little room (other than to accompany Ben for tests) in over a week. Needless to say the mommy is going 'round the hat rack!

The residents started early, it wasn't even 7:30am when they arrived. The ones from ENT that is. I am not really sure why but they were questioning when Ben was having his bronchoscopy and honestly they knew about as much as I did.

Some of the residents and nursing students haven nasty colds so I have been making everyone put on a mask before going near Ben.

When the resident team came in I pointed out that the rash on Ben's face hadn't improved and that I am sure it is from the linens here, since he didn't have the rash at home. A hydrocortisone cream has been ordered although to this point I have yet to see it.

The main resident, Marlin, said that Ben's surgery "should" happen Monday. This makes me wonder if there isn't some internal force at work that may delay us farther in this journey.

Dr. Suzedec was in as well and is very pleased with how little Ben is growing. She agrees that it looks like his little jaw is growing on it's own. This is a very promising sign that surgery will indeed be able to fix Ben's airway.

Ben's weight is up again today. He gained another 50g since yesterday. That puts his weight at 4240g (4.240Kg). At least we are getting somewhere on that front.

The call bell system went down shortly after lunch and I was told to "Yell REALLY loud" if there was an emergency. Not very reassuring but luckily not something I had to test.

I have also asked that a note be placed on Ben's file in regard to his NG tube. The last time the tube was pulled out the ENT people put the tube back down the same nostril. I have asked the sides be alternated (like they are supposed to be!!) the next time he needs to have it changed or it becomes dislodged. Hopefully this will help, since his cheek looks pretty red and I want it delt with before it gets sore.

Messages have been left for our main ENT doctor (Dr. Hong) and our plastic surgeon (Dr. Belowzy). We should hopefully know tomorrow when our big presurgery meeting with them is. We also should know where the vanishing letter from Dr. Hong has gone and where and when the bronchoscopy is going to be exactly.

Ben loves his ladies on the unit, and the nurses all love him. Every one of them wanted to look after him and I basically got kicked off the unit! I broke down and did as they asked and took some time to leave the unit for a few minutes. Perhaps being cooped up in this room for so long is making me a bit loopy!! I walked over to the women's site via the link building and went to the Ronald MacDonald family room and used the phone there to call Ashley. I also had a fresh cheese tea biscuit, right out of the oven. It was so good and the closest thing to real food I have seen in a while.

It may have only been 30 minutes but I needed it. Hopefully once Ashley and Harry are feeling a bit better we can all go out somewhere for an hour or two and just clear our heads.

We are getting there slowly....

T-5 days....

6 Days...

Another day down and one day closer to surgery. Only 6 more days.

Today was a normal day on the Pediatric Medical Unit. The nurse was in by 7:30am, the pediatric resident was in by 8:00am. The whole team was in to see Ben and discuss his progress. How he was doing on his medication and if the cream was helping the dry skin on his poor little face.

Feeds have continued as normal, trial by bottle first followed by top up NG feeds. I am now a pro at the feeding pump and have actually been showing the nurses a few tricks I've learned along the way. Ben is back up to taking 2 ounces or more by mouth every feed during the day. His weight continues to climb and he is up to 4.190 Kg as of this morning.

The dietitian came in and discussed a care plan. It looks like Ben is far surpassing their expectations for weight gain. We all agree to not change anything prior to his surgery. After his surgery she feels the NG will slowly be discontinued. This gives me hope that with a lot of hard work with Ben we can get him feeding and gaining weight totally by mouth and get rid of the tube within the next few months.

I have been working with Ben to help him develop his jaw muscles. The doctors have suggested a minimum of ten minutes of sucking on his bottle at his feeds, allowing him to use his soother and facial massage. I have been allowing Ben to stay on his bottle for up to 25-30 minutes if he is interested and offer his soother while the feeding pump is infusing. I am sure poor Ben thinks his mother is on drugs by the look he gives me when I try to massage his jaw and cheeks. Only 6 days.

This time next week we will be post surgery. T - 6 days....