Ready To Go Out And Play

Quote of the Day

“If one studies too zealously, one easily loses his pants.”

~Albert Einstein

Ben Wearing Harry's Hat

Sorry for the poor quality but it was taken on my Iphone. I thought it was too cute not to share!

Welcome to Holland

Welcome to Holland. Yup that's right Holland. Today's post is a rant or vent if you will on exactly what my husband and I have been going through. We were planning on Italy and got Holland.




Confused??? Yes?? I thought so. Let me explain.

There is a fantastic poem that sums up life with a special needs child.  The metaphor in the poem is what I am referring to. The poem is written by Emily Perl Kingsley. She is a writer for Sesame Street and her own son Jason was featured on the show many times. 


Emily wrote the fantastic poem "Welcome to Holland" to try and allow others to understand what it was like to have a child with special needs, in her case Downs syndrome. She writes the poem to give a very strong metaphor about preparing for a trip to Italy (having a baby) and getting off the plane unknown to her in Holland ( having a baby with special needs). I would encourage you all to read the poem. Go to Google and type in Welcome to Holland or you can watch the video of it being read below that I found on YouTube:







This is the closest thing I have found to explain how overwhelming the December night was for us. Everything went from the highest of high to the lowest of lows.

I will never forget the sound of the air being shut off at Valley Regional so that the LifeFlight Helicopter could land.  To continue with the metaphor of Emily's poem, when we arrived at the IWK hospital it felt like Ashley and I had been thrown from a plane somewhere in the middle of Holland with no map and limited Dutch speaking skills. What Dutch we had only made us worry and that much more afraid.

The journey has been very overwhelming thus far. It is something you can't comprehend totally unless you have been through. There is a quiet unspoken language between parents in the NICU/PICU. It's an understanding. The quiet smile and nod as you sit there by your little one, things beeping, flashing or respiring. It is the simple understanding of someone who knows how you hurt, how you want things to be okay, how you want to do something but there isn't anything you can do.

Holland for us was uncharted territory. Pierre Robin wasn't something we were familiar with. We didn't know anything about it. The more we found out, the more afraid we were. Then there was anger and some days there still is. I won't deny it. I was angry. I am angry. Why? Well for numerous reasons really.

First there was the finality of everything.The phrases that started "Your baby will never..." or "Like a normal baby" infuriated me and still do. It was like these medical professionals had a magic ball and decided to tell me our future. In a number of cases they were wrong. As a parent you feel like saying "See what do you know?" but you realized that wouldn't do any good. Yes, the medical profession does this so we as parents don't hold out false hope. So we don't hang onto a dream that will never be realized. Still my husband and I kept trying on many fronts and won.

 Next was how impersonal everything was. It was always cold and clinical. I hated being anywhere near when rounds were going on. I hated how they turned Ben from a baby into a case...not even a patient really. It was always "This is the Pierre Robin baby, baby male Floyd (eventually Benjamin Floyd)...born blah blah blah. I hated it. I know clinically that is how it is done. As a parent, however, it isn't easy. When we were admitted in January I think it was worse. I know the clinically correct term for the reason for admission was failure to thrive, this doesn't make it easier to hear as a parent. Especially every morning for 30+ days. There are only so many times you can hear the team come in and say "This is the Pierre Robin baby, Benjamin Floyd, 6 weeks, readmitted for failure to thrive"....blah blah blah without feeling like you are the failure. That somehow there is more you could have done, something you should have done, or thought of that you didn't that would have prevented the admission and problem. Even though deep down you know there wasn't anything more to be done.

Finally the very few who have decided to be nonsupporting in our unplanned trip into Holland make me frustrated and a bit angry. They meet us with attitudes that somehow imply that this is our "mess" to get out of.
I'm sorry but there wasn't a form to fill in that included a box as to if we wanted a child with special needs or not. Would I change Ben?? NO NOT FOR ANYONE OR ANYTHING, to me he is perfect.
Being thrown into the middle of this kind of a situation takes a very large toll emotionally, physically, financially and psychologically. To be honest and blunt about the situation, the only way to cope is to accept help and in some cases ask for it when needed.

Help comes in many forms from picking up the phone and calling/texting,  helping arrange care for the other kids, making a meal or helping cover financial costs among many other things. In some cases support has come from family and in other cases complete strangers. By accepting this help we are doing NOTHING wrong.

Please do not feel we are looking for handouts and please try and find out the whole story before passing judgement on us. We are NOT out for someone else to pay our tab or deal with the unpleasantness so we don't have to. We want understanding and support.

To answer the questions I have had about the pay pal donate button on the right (namely why is it there), it is there because we have had offers from friends to help us cover the costs of Ben's care in the city. This gave them a way to help without us giving our financial information out. It was an offer and we accepted. That is it.

Now I am sure this has raised the question of  "Isn't health care free in Canada?" well yes...to a point. What people don't seem to remember is that Ben is the patient. While I roomed in with him, I was NOT a patient. While this seems obvious and trivial it makes how you view the situation totally different. Ben was able to stay for free in the hospital. I was allowed to stay with him. Ashley, however, was not able to since he had Harrison with him. This means that in order for Ashley to be close by to emotionally support Ben and I during all the procedures he needs to PAY to stay somewhere. Then there is that matter of meals. Ben was able to get breast milk or formula. That was the patient meal. This means for Ashley, Harrison and I we needed to pay for all of our meals. Three a day for 30+ days. That is a LARGE chunk of change. Then there is the fact we had to buy a van to get Ben's car bed in. The gas for a van isn't cheep either, especially driving 100+ Km each way to and from the IWK. With the van came the registration and insurance and all of those little extras. Lets not forget parking fees too. Plus there was Christmas. Then there were Ben's medications and medical supplies he was discharged on/with. They cost money too. Even though I have a drug plan we were still left paying a hefty bill. Then there are the follow up appointments. Driving back and forth means more wear and tear on the van (repair bills like the brake line), fuel cost, parking and meals. As you can guess things add up quickly. This is without taking into consideration the airfare for Ashley, the fact he was here on unpaid leave for a long time and lets not forget the "Chevy Aveo" Chronicles that preceded this whole mess. Oh and we have the "normal" bills for not one but two households. I am sorry but this is why when someone OFFERS to help us financially I don't turn them down. I certainly do not expect ANYONE to help pay for these things, and I am not asking ANYONE to do so but when the offer is made to us (no matter how large/small) and I accept this does NOT make me a bad person. It will not make me "stronger in the end" to turn the help down and find another way.

I would also like to point out that I am now here on my own without my main emotional, physical and psychological support, since Ashley had to return to the UK and go back to work. Holland is NOT an easy place. It is lovely but it can still be overwhelming.

Now for the UP part of the post. I want to thank a few of the people who have been our supporters.The ones who have followed us into Holland and are there with us to stay no matter what. THANK YOU. To my parents, our other children (Victoria and Harrison), my grandmother, several of my aunts and my uncles as well as my great Aunts and Uncles, Emelie ( my cousin or rather my sister since she is the closest I will ever have to a sister) her husband Jonny and son Parker, many many  more of my cousins, my friend Laurie and his mom Lucy, my husbands friend John, our church family, the entire Gaspereau Elementary School Family, my father in law, all my sister in laws and brother in law, my nieces and nephews, as well as our friends who follow us on Facebook and the blog ( Sara, Carolyn, Louise and Bill, Marcia, Erdeena/George, Marjory, Barb and Dave, Andy, Guy, Mark and Pam, Judy, Connie, Tiffany, Margaret, Andrea, Ashley, Pat, Sherry, Melissa, Marlee, Charlyn and too many more to name) THANK YOU!!!! You have all given us so much support in every possible way. We would not be surviving in Holland without you. The little things mean so much.

We are adjusting to life in Holland. Even though it is different, I think we are going to like it here.

BIRD is the word!!!

We LOVE to colour!

Harrison wearing Victoria's sweater.

Bad Day....

This has been a bad day. End of story. Where do I even begin...

Last night Ben became inconsolable. It happened out of the blue...he just couldn't settle. I have noticed that his pin site has been getting progressively more red. However no doctor seemed to be too bothered by it. I got the "It looks fine" and "It's normal for there to be redness when there is external hardware" that kind of crap. Yesterday the discharge continued but was mixed with blood. I cleaned the sites with sterile water and that helped a bit I think. However last night I noticed a lump. A very small but definite lump by his right external pin. Over the morning it got bigger. It was warm. By noon you could see a faint yellow collection beneath the skin. I managed to talk the pediatricians office into seeing us. Problem was it was at the same time as Victoria's dentist appointment.

I made arrangements to drop Mom off at the dentist with Victoria and Harrison. I hadn't had my Iphone on me but when I got back to it I had a message that my husbands step mom had passed away. While she had been sick quite a while and we knew it was coming, it was still hard to hear.

I dropped Mom, Harrison, and Victoria at the dentist. I carried on to the pediatricians office. Honestly I was there less than 10 minutes. She did not like the look of it. She called the local hospital. She did NOT like what they said so she made arrangements for Ben to be seen by the IWK.

I doubled back and picked everyone else up from the dentist. I noticed what looked like a river running from the back of the van. Since it was fairly warm today and we had so much snow the last couple days I didn't give it much thought....BIG MISTAKE.

Victoria made out well at the dentist. No cavities and she doesn't need to be seen again for a year!! (The only YAY moment of the day!!)

I took the crew back to my parents and headed into the city. I hit Halifax just before rush hour...not fun...especially in a HUGE van from the late 90's.

Poor Ben was beside himself by the time we got there. He was in so much pain and had a mild temperature. He was screaming blue murder.

Over the next 5 hours we saw 4 ENTs (residents and the on call guy), 4 Plastic surgeons (again residents and the on call guy), The ER doctor, loads of nurses, someone from pain services, a radiologist and a lab tech since the nurses were having trouble getting blood work done on Ben. Ben also had to have a mild sedative so one of the surgeons could drain the collection next to his pin. After that Ben was taken for a CT. Then the waiting began.

To cut a long story very short the decision was made we could go home BUT Ben would be given two high dose of IV antibiotics, IV pain medications and some Tylenol for his fever. I was given a script for more oral antibiotics to be started overnight as well as prescription strength pain killers. Also I was to bring him back if he hadn't improved in the next two days. Like wise if he gets worse I am to go straight back in. Should he stop eating well or develops diarrhea from the medication he needs to go back for admission. We are to be reassessed by his surgeons on Monday. We will make a game plan then. Hopefully we can avoid readmission and more surgery. Should all go well we will be seen again in the clinic the end of the week.

When we finally were allowed to leave with our high dose antibiotics on hand, I paid my 9 bucks to get out of the parking garage and noticed a large pool around the van. I wrongfully ignored it. Turns out the brake line my husband had fixed has completely gone again. Wonderful. Something else to be fixed.

To top it off the weather driving home was horrid. Snow, rain, freezing rain and ice pellets depending on where you were from Halifax to here.

The boys are both asleep now and so is Victoria. We are staying at my parents for tonight in case I need to get Ben seen again through the night. I physically, emotionally and psychologically hurt. I think I will get some tea and head to bed. Hopefully some sleep will help me get over this horrid day.

Before and After

Ben will be 3 months old tomorrow. I can't help but think back over it all and realize how unbelievable and overwhelming it has been.

It is hard to truly comprehend exactly how fantastic and life changing this operation was for little Ben. So here they are the LONG awaited Before and after shots.

Ben the night before surgery:

And now here he is....taken 14 days post op...what a difference two weeks can make!!!

Hard to believe it is the same little boy! He is such a fighter!

Dear Air Canada....

Dear Air Canada,

Please don't take this personally but my husband hates you. This is one case where the "It's not you, it's me" speech will not work. It is you...all you! Where do we even begin to explain.

Perhaps it is the plethora of fees you charge for nothing. The fees should stay the same...but sadly no. We think you make the figures up as you go.

Sometimes two bags can be checked for no additional cost. Other times it is a $20 Canadian surcharge, other times it is $75 or even as much as $100, the other times it is nothing at all.

Then there are your change fees. Sometimes no change fee sometimes it costs $90 others $200 or $250 BEFORE the fare difference and is never what was quoted at the time of booking.

Then we move to your lovely "food". Which on the international flight you still provide "free" is at best, inedible. You get what you pay for I suppose although with increasing fares and decreasing cabin space, "edible" food does not really seem like an unreasonable request. Alas this is not where our disappointment in your high quality "service" ends. On other flights where I can purchase food that may be slightly more appetizing WE MUST use a credit card. No other option exists. Charging a pitiful sandwich and can of Pringles on my credit card is the last thing I want to do however you leave us no choice.

While we respect the fact that for our own security we can no longer transport more than a drop of liquid through security, questioning us what my husband will do with the "large" bottle of water he requested of you in flight seems a bit rude. What did you think he was going to do with it?? Maybe take it to the lavatory and make some sort of "shower" out of it? Really??

Then we move to perhaps what has become the deal breaker. Notification of flight changes, or the blatant lack there of. Most times I am anal enough to catch whatever flight change you try to slip past us however in the last month you have gotten away with it 3 times! Not just to my husband by my father and daughter too. Really calling my father as the plane is ready to pull away from the gate really isn't proper notification. Nor is emailing us that you have moved my husband to another flight at YOUR discretion when we asked changes be called in to us. Paying for three airline tickets to get my husband back to the UK and to work because of your stupidity and lack of customer service is not okay, EVER. While I understand economic times are tough, you are in the customer service business. Telling us the best you can do for us is to purchase a new ticket sooner than later is really not customer service on any planet.

There are so many other things I could mention that have caused our relationship to go south. Losing my suitcase for over a month, then once finding it shipping it to some random address, running out of "free" meals on the aircraft and flying planes with only one functioning lavatory in economy come to mind, but I digress.

Please consider this letter a termination of our association.

Sincerely,

Former Air Canada Passengers.

Here we go again....

Today was our follow up appointment with Ben's ENT surgeon; Dr. Hong.

Over all he made out well. The doctor seemed pleased with how things were going and this means we are able to move on with round two of surgery.

This time we will be removing the external and internal hardware. Not as big of a deal and it should ( I can't stress the SHOULD quite enough) only be a few day admission this time.

Our pre-operative work up is Tuesday April 10th. This will take, from what I am told, most of the afternoon.

We are to be back to the day surgery/same day surgery area the following morning for 7:30am!! I am going to try and stay at Ronald MacDonald house, to avoid filling the van with fuel twice!

I have to admit I have very mixed emotions about surgery this time. I mean on the one hand I want the metal work out! On the other hand last time Ben ended up with a ridiculous amount of post operative pain that had to be controlled by morphine AND he ended up with a very nasty post operative infection that required 6 days of IV antibiotics followed but almost 3 weeks of oral antibiotics. I would really like to avoid BOTH this time around. Not to mention I went more than a little stir crazy in that hospital last time.

Now we just sit back and wait....T-33 days until surgery round two...

I Don't Care....

Suddenly I no longer care that...

1. The Christmas tree is still up and it is March. We haven't been home that long and it's artificial so it isn't hurting anyone.
2. My living room no longer looks like a living room. It looks more like a daycare play area.
3. I currently have more toys out of the toy closet than in it.
4. My TV only seems to play Elmo's world, sesame street, Thomas tank engine and secret agent Oso.
5. The boys have multiple baths a day, while I have been demoted to only 1.
6. I get more sleep on the sofa than in bed...honestly I am just happy to get sleep.
7. I own a van that is pushing 15 years old.
8. I spend more on apple juice for Harry than anything for the rest of us.
9. Nothing is really organized. It's put away and really isn't that all that matters?!?
10. That I should be doing housework instead of writing this post.

We are home and that is all I care about.

My Boys

Update

Well we have been home just over a week and life is slowly returning to "normal". I use the term loosely as I don't think things will be truly normal for a while yet.





Ben has been seen by both his pediatrician in the valley and his family doctor. Due to our prolonged hospital stay Ben missed his scheduled RSV needle as well as his first immunizations. This meant that the poor little guy had 3 needles at once when he saw the family doctor this week. This made him a bit of a grumpy Guss...I can't say I blame him really.





Ben has done well on the weight front and has put on just shy of 300g since discharge! Woohoo!! Can you tell we are working hard to keep the NG tube out?





Ashley is getting ready to return to the UK to go back to work. While I know this is a necessary evil, I am NOT looking forward to it in the least.





Harrison is still teething. He is working at getting all of his molars at once. He isn't a happy boy needless to say. The poor little guy has also caught some sort of virus. Fever, sore throat, doesn't want to sleep or eat and has a slight rash. I think there is some new rule that someone must be sick or unwell in my house at all times.

Lets hope Harry throws this quickly and my boys are a bit happier ASAP!