Peyton is 7

7!?! I can hardly believe it.  I actually spend a good chunck of the day reminscing about his birth day, how aour sweet boy made me a Mom, made us parents. Other than eating CONSTANTLY in the beginning, he was such an easy baby. Calm, passive, content, smart (if I do so say myself). There was no lack of joy he brought me. When I get upset at him now, I try to think back to him being that little first born boy of ours and how I never yelled at him unitl Carter came along (oh Carter we love you).
He has adapted to so much over the past 7 years, and is still such a sweet boy. Now that he is in grade two, I wish I could bottle up everything about him. He is acting all grown up and can express so much, I can have a real conversation with him.
I pray he uses his brain for something wonderful, that he can use his perfectionism for greatness. That he stays sweet and grows into a wonderful gentleman.

Peyton we love you and thank you for making me a Mom!

Miraculous!

We had a follow up appointment with urology today. I had told our Dr. in September that I had stopped giving Zachary Ditropan (a medication that slows the bladder down as Zachary has a bladder that works over time) a few months before.
Anyways, he wasn't very impressed that I didn't discuss it with him first, although I had expressed my dislike of the medicine when I saw him at SB Clinic in April.
So of course he wanted to see him in a few months to see how his bladder and kidneys were tolerating the lack of meds. Which is what brought us to today.
We had our ultra sound and after a long wait finally saw the Dr. And after a mix up on his part as to why we were there, he went and retrieved our ultrasound results.
And get this...his bladder is looking even better than the last one we had!!! Can you believe it?! He still has a neurogenic bladder and will still need some sort of medical intervention for his bladder later on...but for now all is looking well!
Just wanted to share our exciting news and apologize for our absence lately :)

I have started this post a few times and have yet to get enough time to finish it...so I'm a few days late,

It's all about THAT DAY, one that I could rehash the details of the heartache and unbelief and trauma. But instead I will focus on all that came after that day, the blessing, the miracle, the perfect addition to our family.

Carter is 5!!

My sweet middle boy is 5 today. We usually refer to him as the "medium brother" as he fits the big brother and little brother role :)  Carter is still the same firecracker he has always been. He has a zest for life like no other, yet he is so sweet and more compassionate than the other two (although Zachary has time to grow into that trait) He loves school and nascar and playing playing playing. That's definitely how he learns. No textbooks for this boy, he's all hands on. He is funny and witty. Always getting the joke and a quick one liner.
I hope I can continue to foster his energy, as there are some days I wish he had an off button. lol
He is loud ALL.THE.TIME. And don't let his small frame deceive you, he makes a lot of noise with those feet :) He loves being with his big brother and is very excited to be at school with him this year.

Happy Birthday little man! You are loved beyond belief 

We Have a Walker!

And not the equipment kind!

I just listened to a message from my PT regarding being able to borrow a walker, as we had not been able to rent one. Only a few weeks ago, trying to find a walker was part of a big stresser for me. I sit here amazed while I returned her call saying we no longer needed it as Zachary is now walking ALL.ON.HIS.OWN!!!
No walker, no afos...just him and his own two feet.

I'm not a downer, that would never be a word used to describe me by anyone I know...but lately I feel like one. It has actually been the cause of my blogging hiatus. Usually I'm just a plain old bad blogger, but I have actually wanted to blog, except everytime I went to think of the next post, it was only downer thoughts. And since it has been too long, I am giving in. This post may no make sense to all and may not have any specific flow to it, but I think I need to get it over with. :)
I am tired of the fight I feel within me all the time. Recently we have had to start bandaging Zachary's bottom as he has a pressure ulcer from his tailbone. As a result of where his Spina Bifida is, his tailbone does not have a natural curve to it, it points straight down. And since he is on the move, the wear and tear of sitting, falling and general moving has created this sore. It started about 6 months ago and has just progressively gotten worse. I didn't like how it was developing and I made an appointment to see a Dr at Bloorview. Of course the orthopaedic surgeon is on holidays (until September 23rd I might add), but we were able to meet with Dr Church. I never have a problem seeing her. SHE.IS.FABULOUS.
So the treatment right now is to try and get the wound to heal. I'm not sure if you have ever tried to bandage a toddler who still wears diapers and poos constantly that has an open wound 3cm from where his poo comes out (sorry TMI)...but it is not an easy task. I feel I have the bandaging down pat, it's the keeping the poo out that becomes the problem. We were hooked up with our local community care and they sent me some supplies (Bloorview had sent me home with about a day and a half worth) Upon receiving my supplies they gave me 2 bandages...TWO. So after 3 hours I was out lol. And we can only order more supplies when the nurse comes...the nurse that was supposed to come between 6.30 and 7 (so no problem I'll miss Carter's ball game) and then doesn't show up until after 8 (no problem I'll just keep my 18 month old awake an extra hour so you can assess him). And she told me she would put a rush on more supplies for today (it is 8.30 and nothing has arrived) I have been gone most of the day so I was not able to make any calls to see where they might be...so now I have nothing.
Sorry for the rambling and the story could be longer, but I'm just tired of having to do so much calling. Trying to get a walker to borrow/rent...none available. And that's phoning 4 different places to see and then wait for a call back. I'm tired that the only outing I end up doing with my boys is visiting Dr's offices, because on the days we don't have an appointment, I can't muster up any energy to go anywhere.
And trust me, I know I have it easy, that's why I hesitated for so long to ever write any of this. Perspective is a wonderful thing. But somehow I just can't shake this feeling.
If an acquantance met me and asked how life was, I could honestly say I love my life, my family. But there is a cloud that just is not allowing the sun through right now. I have a strong faith, I have a wonderful support system...and seriously have you seen my boys (well maybe not as I have not been posting a whole lot of pictures) but let me tell ya they are some cute. So I am hoping this jumbled up post will help move those clouds away and show me the sun I know is obviously behind.

The boys have been asking to go on a train ride for a long time (since last summer infact) and I thought it was about time to take a trip.
We live about 45 minutes from Toronto, so what better place to take a train to. I thought I would one up them by also taking them on a boat ride.
Ryan had the day off on Friday and we planned with another couple friend of ours to head to Toronto Island.
It turned out to be a great day.

Sorry it's not the best video as I was trying to film and have him walk towards me. 

 But really have you ever seen anything better!?!

(And please disregard the clutter)

I had a post all set in my head of how I would roll out this exciting news, however as I sit here to type, my words escape me.
And not that many words actually need to be used, except that I have no pictures of this grand event.

Picture a time after a bath, a fresh squishy baby, in a clean sleeper and finished the last of his milk for the day. Toddling around a dumped out box of jenga blocks and clinging to the coffee table that adds extra security to his careful steps.

I sat back away from that coffee table and encouraged him to let go and come find my embrace only steps away. And without any hesitation he turned to only have one hand still on the table and made his way towards me. It was only two steps and he quickly fell into me, but they were diliberate and on purpose. And to my surprise, he did it again!

It's amazing to think that last week was the first time he stood on his own for a length of time and now I am able to record baby steps taken. He also did not have his afo's on, so I can't wait to try it again tomorrow.

I am so proud of him, not that he is taking steps, but that he is finding the courage to embark on the next part of his journey. You never know what steps you can take until you let go and try. It's amazing how his journey can have such a big impact on the perspective in my life.

Not feeling so hot today, but I wanted to get this video up and share with you all :)

If I were a crier...

There would have been water works.
At our last physio appointment, I brought up the possibility of trying a walker for Zachary. It was on her list of things to do and wanted to introduce it the following week. Well the following week came and went and there was no physio, as Zachary came down with tonsilitis.
That was a long week to wait, but Monday came around I was ready to see what he could do. 
He was not happy with the arrangement at first, but after two lengths of the room he finally became curious about this contraption that I kept hovering behind him. And then on the third walk he finally took hold of the handles and away he went! That lead to him doing 3 lengths all on his own. And yes, I felt my eyes fill up with tears. I was so proud of him, just even the fact that as much as he resisted holding those handles, he discovered a taste of freedom.
Our lead up to Monday was a fun evening out to ribfest...mmmm so good. Amongst the food, friends and carnival rides, Zachary had another breakthrough. We have been trying so hard to have him walk only holding onto one hand, boy does he ever resist! But during our evening out, almost 80% of the time he toddled around only with one hand!!! Even on the playground, up a bridge and down a bridge (I thought that was a big deal :)).
It is still not something he does all the time, but it's steps in the right direction.
He even showed off on Monday as we walked down the hall to our physio room.

I am so proud of our little guy and am happy living in this moment, not wanting to always wish for what the future holds. To soak up all that he has accomplished so far. Spina Bifida is a whole lot of hurry up and wait and right now I want to take in the wait.

Potential...

Potenti|al...this is a word that has been in my vocabulary recently. How do you reach it, when do you know you've successfully acheived your full potential. 
Peyton is a bright boy (and while I'm biased...he really is). And there have been a few conversations about reaching a higher potential. He is a whiz at math, he always thinks in numbers and is eager to learn more about math languages. However his marks at school don't refelct the amount of knowledge he has in his brain. They are not bad marks, but if you knew my kid you would be sure A's would be the letter of choice for math.  His teacher chatted with me this week and let me know, that while he knows all the concepts, he has a hard time expressing how he came up with the answer. He's a bit of a perfectionist (I have no idea where he got that from) and is afraid of saying the wrong thing. In his grade level it's not about knowing the answer but knowing how to explain the answer. All this is valuable to growing up and becoming well rounded, and I really appreciated his teacher letting me know. I
I told you that background story to bring you into the conversation and thought process I've had around full potential.
I spoke with Peyton about what his teacher said and asked him if understood what she was saying. Where is his full potential and was he at it...the short answer is no.
How do we measure it? Who gets to determine that full potential has been reached. Of course we go through this in our heads with Zachary, because he was born with obstacles put infront of him. But I never want to miss an opportunity with my other boys, pushing them to reach their full potential. So while I set up physio appointments and Dr appointments for Zachary making sure he doesn't miss one thing, may I strive to make sure my whole family reaches their full potential.

May we never settle...

So I know, I know...I pretty much suck at blogging right now. I was hoping after a couple of weak blogs I would be able to get on track and really have a great and profound blog to come back with a bang...Don`t hold your breath, I have no Bang.
Life has taken over lately with a little bit of sadness and a lot of busyness.
I don`t want to dwell on the sadness part, but I will fill out in. I have felt tired and run down, no energy and defeated by how SB has changed my world. Now before you gasp and think how could I write such a thing, let me see if I can put my thoughts into words. I am not worried about what Zachary can or cannot do, I am not feeling overwhelmed by Dr`s appointments, I am not discouraged about having a perfect baby that now has a scar...but I am hating the fight that waits under my next breath.  I don`t feel sweet anymore. I feel I am researching and trying to advocate for Zachary, that it has taken away from how I want to be. I feel jaded.
All my worst fears when I found out about the adventure we were going on.
I`m just not myself.  It is getting better, which is why I can now blog about it. :)

*******
Zachary had surgery last Wednesday, it was the second stage of a Urology surgery he had in September.  We waited a long time to get in for this surgery, it was originally supposed be done in February (that`s a whole other blog post lol). It was a long day, as is any day that your child is having surgery. We took the older boys too, as our sitter is getting ready to move and we just thought it would be better to bring them along. They were so good and had a chance to play in the siblings play room. Zachary did great as usual, I`m always amazed at how well he does after we`ve had to starve him.
The surgery was successful and hopefully we won`t see the OR for a long time.

He still does not enjoy his AFO`s. And emotionally it`s been hard for me too. I know he will get used to them and never know what it`s like not to have them, but for the time being, it`s.killing.me.  I wish the professionals would have had some foresight. I wish he started with the AFO`s when he was 7 or 8 months old. That way he would have learned to do everything he is capable of doing with them already on. Rather than him fighting to be able to do all he can and then stick these things on him, that make him start all over again. It is truly heart breaking.  Right now it`s one of the first things I would tell parents of an SB child...if you know they are going to need them, get them used to them right away.

One of my favourite finds came from a fellow SB mama. I absolutely love these for over his AFO`s, they are called skidders. Essentially they are like socks but with a rubber bottom. They allow his braces to not feel so bulky but provide a good tread. At first I was really sad because I only found them online and the shipping was more than the shoe. After searching around I found them at Walmart for $10...cheaper than online. I love a good find :)


We are starting some physio sessions, and I`m really hoping they get him going somewhere. I don`t have complete faith in out therapist, but I am glad to be seeing someone.
My goal is to get him independent...whatever that means for him, in his own time.

I haven`t even uploaded any pictures recently...but I do have a couple that I haven`t put on here, even if they are outdated.

I have much to blog about and no time to do it...

I need to update on Zachary and his AFO's

Zachary goes in for surgery on Wednesday

and a bit of life in general.

And hopefully I will soon,

but for now I wanted to leave this quote, because I quite liked it...

"Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway."

— Mary Kay Ash

I belong to a group on Facebook called United by Spina Bifida. There are all kinds of people on there whom have some sort of connection with someone born with SB.  I'm not really active on it, but I like to have a look when I log on to see if there is something that pertains to me. Earlier this week there was a posting from another Mom who had struggled with the diagnosis of her child and wondered if it had affected anyone elses faith like it did hers. While the posting made me think of how my faith was affected, that's not what stood out for me...a grandmother posted a reply talking about Jesus healing the blind man.(John 9:1-12) In the story his disciples ask Jesus who had sinned, him or his parents. Jesus answered them by saying neither had sinned, but he was born this way that the work of God might be displayed in his life.

It was like a light bulb went off.

Let me tell you, I never once struggled with my faith in thinking I no longer wanted to have a relationship with Jesus...but I certainly asked why, I certainly wished for another way, I certainly prayed for a full healing, but my faith at the core did not shake.

But for the first time I felt like it wasn't my fault. I didn't even realize I had put that much blame on myself until it was gone. I would love for Zachary to have a healing-the-blind-man moment in his life some day, but as far as I'm concerned the glory of God has never ceased to show in his life. From the very beginning we have had miracle after miracle and I forever want people to know what an Awesome God I serve. 

Hate is a strong word, one that we encourage our two older boys not too use, but I am going to use a "bad" word and say Zachary HATES his afo's :(




I was all excited in anticipation with this day. I couldn't wait to see the potential the afo's would give Zachary. That he would rock them out and surely take his first steps (well I wasn't that delusional) but I thought he would see a freedom in how they helped him stand.



That was not the case. If you have ever met my sweet boy, he is just that...sweet. compliant, happy and non fussy. Needless to say we did not have any of those characteristics yesterday. He was sad the moment they went on. He seem to be paralyzed with fear at the possibility that he could still move his feet in a forward motion. We walked up and down the hall a couple times, which he did like, but stared at those things on his legs the whole time. His sad little whimper seeming to ask me what I was doing to him, was more than I thought I was going to have to handle that day.
They fit perfectly and are decked out in Maple Leafs, Colts and Blue Jays logos (yes Ryan was given the go ahead to pick whatever he liked, I truly didn't care)

We got home and I put them back on him again and that sad little face just broke my heart.
Now, I know how amazing he his doing. Not all SB families can write about the same story I am. And all the sad faces would not make me change his progress for a second, but it still broke my heart none the less.
He doesn't even want to crawl, he just sits there looking sad.
It made me jaded about the whole thing, and that is my biggest prayer, that I don't ever feel that way. Sure I can have days of this sucks and I wish, but I don't want it to cloud my actual outlook on life. I hurt for him, that he thought I was doing something terrible to him.

I know over time he will get used to them and I'm not in the least bit concerned that he has them in the first place, but yesterday was plain old hard.

Showing off the new gear





The gear



The ONLY smile I got out of him...pretended I was playing peek-a-boo

Hurry up and wait...

Sad face looking out the window

I can't believe how long it's been since I've posted something!!! Life has been busy...3 boys (enough said lol), back to work, sickness and life in general.
There is so much I could cover, but I think the biggest right now is Zachary's visit to Spina Bifida clinic last week. This is our second clinic day since he was born, the first time we went he was 2 months old. It was interesting being back there after having a whole year under our belt. We were to see the paediatric nurse, orthopaedic surgeon, urology, and physio therapy, as well as Dr Church (my favourite).
First up was the nurse. I had a couple of questions for her as Zachary had an infection on his toe and seemed to have what I thought was a pressure sore on his bottom. Sadly I have no idea how his toe ended up like this (yes I check over his feet everyday), and he was already on antibiotics. She agreed it the sore on his bum is a pressure sore and would have ortho look at it. His tail bone doesn't curve under, it points directly straight down like a dagger. I was a little irritated as this is something I've brought up before, because I was sure this was going to happen. It only seemed natural that the bone would eventually cause problems.
Anyways, from there we saw physio and they were amazed by Zachary (love hearing that!). He really is doing fabulous. :) Kim asked about next steps and I was hoping we could get the ball rolling on AFO's (ankle foot orthodics). She was happy with that and wanted to see if we could even be casted for the that day.
I just re-read some of my post and I apologize for the choppiness...I have had to keep coming back to finish the post, so of course my thoughts are scrambled each time...lol. But since it's been so long since my last post, I'm going to leave it as is and just roll with it :)...so bare with me.

Ortho brought in some foam for Zachary to sit on to relieve his sore. He has quite the booty now, from having to stuff it in his pants. Although I have seen a difference in the sore, so that's promising. I'm not too sure what other steps they will take going forward. I can't see him having to walk around with foam down his pants the rest of his life. While with ortho, physio came back to let us know we could go up to orthotics when we were through, so Zachary could be casted for the AFO's! I felt like we were getting somewhere.  After only seeing physio twice since November, I felt left in limbo. Not sure if I was doing enough and annoyed that it seemed Zachary was at the bottom of everyone's list.  We go back April 19th to pick them up, I can't wait to see what sort of potential he has with them!
Urology was fine. We saw the same Dr that we see at Sick Kids. Ryan was able to ask all his questions regarding the future and what it all means for Zachary.

We also saw Dr Paige Church. I truly want to be her friend. I loved her last year and she was just a wonderful this year. She just has a way about her and she is so good with the parents. You feel in such good hands and she strives to look at the whole picture of your child.

So this has taken me ALL day to write and really I haven't left you with much.
But I am really looking forward to getting his AFO's (with blue jays, leafs and colts logos on them).
And we are pleased that spring might finally be here. :)

I have spent the last 20 minutes typing and retyping what I thought was going to be a quick post. One reflecting on Zachary's arrival home 1 year ago. And part of the retyping was because I started that post last week when the actual anniversary was, but because of an awful stomach bug it was put on hold.


And now I sit here not sure how to sum up that arrival one year ago. But it was the beginning of the family we are now. The compromises, the growing, the love, the tears and I hope we are better for it.
I want to be better for it. I don't want to be jaded towards life, I don't want to be so consumed by my own family that I miss helping those around me. That's where I am right now, trying to juggle my own craziness, afraid I'm missing out on impacting someone for life (and not that I think what I do will ever have such a lasting effect, but I want to try like it would) Because right now I feel like I'm doing nothing. Living in this bubble of appointments and trying to breathe in between them, trying to get my 4 year old to legibly write his name, cleaning up puke from my 6 year old, going to work and some how convincing my husband I am not supermom (but still want to be referred to as such).

I am blessed, blessed beyond what I deserve. Growing up, if you asked me what I wanted to be, I would have told you a wife, Mom and missionary. I have accomplished all 3. There are very few people in this world who actually get to say they are living their dream. A dream, I am living my own dream and yet somehow feeling like I'm not succeeding at it. Maybe it's just been too long of a week, doing too many loads of puke laundry, too little sleep while trying to convince my immune system to start functioning at full force.

I sit hear listening to nighttime coughs, wondering if they will wake a sleeping baby and if I should prepare for another round of midnight laundry, but know I am blessed and will strive to start impacting and blessing other people.

Playing dominoes together

Sitting on the Potty!

Zachary always looking for someone else's food...

I have been excited to post this one for a while. It has been 6 years and 3 months in the making...
 Here are my 3 little men from 1 month to 12 months!

 

Nothing says I love you like a pair of sneakers...

Ryan bought me running shoes for Valentine's Day, and while that might seem like an unconventional present, I truly love them. My old pair of runners, were just that...old. And in the fall I stepped in dog poo while raking leaves (I might add we do NOT have a dog...was not impressed with that one) and they were ruined. This served as a good excuse to buy a new pair, but I wasn't willing to just go out and buy some.
I was totally surprised when I opened the box! I have now jogged 4 days in a row and hope that this becomes an addictive habit for me. And of course when I am more active, it also helps me make better choices with what I eat. So here's hoping the combination adds to a fantastic body! LOL
The weight that I gained with my 3rd baby is not disappearing as it did with the others. That's not to say I was skinny after the other two, but I got down to a much more comfortable weight in a faster time period. I decided to blog about it to just put it out there and hope it provides me some inspiration to keep going. My goal is obviously to lose weight, but I would like to be able to run 5k in 30min by the end of May.

Happy Birthday

I truly cannot believe a year has passed.  I've now done this first birthday thing 3 times, but I don't remember feeling this surreal with the other two.
I sat looking at his hospital pictures last night and it's hard to believe that's what I was doing last night. I looked at the time stamp of each of them and it was neat as a couple of them matched to what time it was when I was looking at them (sorry for the run on sentence lol)
But we made it, and are stronger for it.
Happy Birthday my sweet baby boy. You are truly a miracle.

12 Months!

Mmmm cake :)

What a year can do...
How do I sum up a whole year. This week I have been taken back to that last week of my pregnancy, how yesterday was supposed to be his birthday, but I'm so thankful that it's tomorrow. Now that a year has past, I'm so glad NONE (you can read between the lines on that one) of his little life was planned by us...but it was totally planned by God.

This beautiful perfect baby is all ours...

Brand new

On our way home after 11 days at Sick Kids

One Month

Two Months

Three Months

Four Months

Five Months

Six Months



Seven Months



Eight Months

Nine Months

Ten Months

Eleven Months

I can't wait to add Twelve Months tomorrow!!
Thank you for taking this Journey with us this year