Welcome to you all! If you have not seen the other posts regarding our curvy journey and Scoliosis please click here and have a read!

The week leading up to her 6 week follow up brought more pain in her left side. A tingling numb sensation. At this point, she was off of all pain meds and was using Tylenol or Advil for her pain.

She had been doing all her stretches except the door ones and the floor with roller. They seemed to be getting more difficult and the pain was a bit worse so I was relieved to be heading back for a checkup. I was not overly concerned, and certainly wasn’t expecting the results we would receive.

It has taken me some time getting this post together, my head has been in a whirlwind since her checkup. Luckily I had made pretty good notes that same day and the days following, so here we go! The bottom line is, revision surgery is required within the next 2 weeks. The top 2 screws have moved.

Waiting for xrays. Little did we know these smiles would soon be replaced with tears and lots of decisions. Soon after the xrays she were being rushed in for a CT Scan. The xray had showed that the to 2 screws has moved, but did not show enough details about what was actually going on. The first ct scan was done, but did not show enough of the blood vessels, so they had to use dye contrast to help get a better understanding. The tough cookie that she is went in for the ct all by herself, I waited in the waiting room. The 2 staff with her just amazing and really helped keep her in good spirits while they were getting the ct scan done. I was very thankful for that!

My mind during the wait….

” 1 hr sitting and waiting for the ct scan. My chest is just so tight, so much anxiety. Deep nose breathing as much as I can to keep myself grounded and as calm as can be. This is not at all what we were expecting today. Deep down inside the past few weeks I had a weird feeling about her recovery… uggg… moms intuition or just mom worrying? who knows? Please just get us some answers and make my baby girl ok.

After having the night to get a little bit of sleep, and some time to think about things a bit more in detail. I guess also once everything sort of started to settle in I’m realizing that this is just a wee set back.
We knew going into this journey that there is always the potential for things to take a different path than what we had anticipated. When you’re dealing with medicine and fairly new surgery, a lot of unknowns are to be expected. Things can sometimes veer off the original hoped for path.
Now although I’m saying that, my insides are still spinning. I know my daughter must have so many more emotions going through her as she’s the one living with this. It’s hard to wrap my head around the fact, I just can’t begin to imagine what she must feel like knowing she has a device inside her that has shifted and is no longer sitting where it’s supposed to be. In all reality, it has the potential cause more pain and really we don’t really know what else at this point.
It’s comforting to know that between the doctor and the Radiologists they feel it’s not something we need to rush on right now( at the day of 6-week checkup). They feel that although the screws are not where they’re supposed to be there is no immediate danger of her spinal cord or her any muscles or blood vessels. They reassured us that it seems to be out of any harm’s way. Now, that doesn’t mean that we can just let things be. Obviously, some decisions have to be made and that’s what we’re going to be having heavy on our hearts and minds the next few days.
I should add right now also, Dr. El Hawary is away at a conference with all the Apifix folks the week before her revision. This includes the designer of the device and almost all doctors from around the world who have been involved with Apifix since the beginning. So although this is not the path we had hoped for, with requiring another surgery, we are so very fortunate that we know she has the absolute best team looking at her situation. When she goes in for the revision, we know that the plan ahead will have a lot of input from a very knowledgeable team. I think that fact is helping me deal with all this just a bit easier!

Here are the options presented:

• Remove the device and replace it with the fusion option. Which is one solid rod with many many more screws securing it in place keeping her spine straight. ( this is the main go to surgery for scoliosis) It has been used for many many years.

• Remove the device and leave nothing in her back and see how the scoliosis progresses on its own.
• Do a revision surgery in which they will add a couple smaller rods and use 3 smaller screws (4mm) to secure to 2 different vertebrae. ( Originally there were only 2 larger screws 6mm into one vertebra)
• Do nothing. Which is not a wise option.

My daughter is quite adamant that she’s going in for the revision. She wants to stick with this path an get the second surgery done as soon as possible so we can let the healing process begin again.
It just amazes me how strong she is really being, I’m sure she doesn’t quite feel as strong as I am seeing. I’m sure that deep down inside she’s a lot more scared than she’s letting on. As a mom sitting and watching her go through this it’s so hard. It’s hard watching any of your children struggle, knowing full well there’s nothing you can do to fix it. All you can do is be there for them. Support them, be the moral support they need and love and encourage them. Be that venting board when they just need to vent. Sometimes it’s hard to not take these venting sessions personally. I am fighting with that. I’m here to support her and to listen. I know the anger, the frustration, the sadness, the scared feelings she has, all of those emotions that she has are not geared towards me. Well, not most anyways!! LOL, So I let her vent. I try to keep my shield up so it doesn’t affect me personally and we carry on.

So that’s what we’re doing now, waiting for the revision.

Luckily going into this her school marks have been really good. The time she has been missing is making it very tough for her to keep her marks as high as they have been but she is persistent and is doing what she can. Hopefully, we can find a tutor soon and that will help her get ready for exams which are just a few weeks away.

Now for those who may wonder if we are happy with the decision she made to try this Apifix surgery, let me reassure you. We are still super confident in the decision made. We have the best of the best working on her and making the best decision possible to have a successful outcome after this revision. Has it been easy? No not at all, but we have no regrets. She is such a trooper and one tough cookie, I am so proud of all she has been through.

I have been in contact with a few other moms whose children have Scoliosis and talking with them has really been a world of help for me. If you or anyone you know may benefit from our story please share this. I would love to hear from anyone, the Apifix community in Canada is quite small, so please share and let’s build up this community if the need is there!

The next update will be after the revision surgery! In the meantime feel free to message here or email us at jensjourney73@gmail.com

Until next time my friends, be kind to yourself and look out for others!xox

This post is well over due and I had hoped to give a more detailed day by day for at least the first few days, but well, the days slipped by and I kept pushing it off.. so now here i am trying to put it all together from all the little notes I had been keeping – thank goodness for pictures and those little notes- my memory is mush!

I have had a lot of people reach out since I first started posting. I never realized how common scoliosis is. It has been great sharing our story and hearing from others as well. We have only connected with a couple of families who have had, or are considering Apifix. Makes me think that maybe an online support and peer networking for Apifix might be a good idea! I will add that to my list! Now I should say there are lots of scoliosis groups but not many in North America that have had or even know of Apifix as it is so new here! So please spread this around and have anyone get in touch if they would like! Here is the link to the Apifix websitehttp://apifix.com/en/

The drive home went really smooth, lol which is funny because the roads in Eastern Canada are anything but smooth!! With the pain medication the hospital gave her, plus bonus one, for the drive really helped to settle her and she slept most of the drive! She didn’t find herself in too much pain, and we made really good time, about 4.5 hours!!

When we got home she went straight to bed and continued on with her pain meds every 4 hours. She found quite a bit of comfort with ice packs, she was having tingling and odd sensations on her left side. She found the ice helped bring comfort. She required assistance getting in and out of bed a little bit. Once in the bed she could slowly move a bit however it was quite uncomfortable. She was in good spirits despite the fact she was pretty sore .

When we got home she went straight to bed and continued on with her pain meds every 4 hours. She found quite a bit of comfort with ice packs, she was having tingling and odd sensations on her left side. She found the ice helped bring comfort. She required assistance getting in and out of bed a little bit. Once in the bed she could slowly move a bit however it was quite uncomfortable. She was in good spirits despite the fact she was pretty sore . Iced coffee smile, a welcome home treat from Chris!

The next day, day 5 post op!!

It just amazes me that only 5 days ago she was in the OR! Recovery has certainly changed over the years for any type of surgery! I am thankful for that, It is nice being in the comfort of our own home! Karen our nurse from the IWK, called to see how she was making out. I explained to her that she was doing quite well but was still having quite a bit of tingling sensations on the left side- she was having this same sensation in the hospital post op. We are watching to see if there is possible nerve damage, but seeing as she wasn’t numb anywhere and could still feel her toes the care team wasn’t too concerned about it right now. Just to reassure all of us, Karen was going to check with doctor El-Hawary and get back to us the next day. When she called us back she said that we could increase the Gabapentin, the nerve pills, if need be to three times a day.

The third day home she was ready for a shower. Oh my gosh, I remember thinking to myself- How the heck am I going to get her in the shower without getting these bandages or these stitches wet first of all, then how is she going to have the strength to get in and out of the shower. She took a pain pill before attempting the shower and within about two minutes in the shower she realized that maybe it wasn’t quite time for this yet. I helped her out of the tub, but not until helping her rinse as much of the shampoo and conditioner out of her hair as we could. Uggg what a struggle, poor girl! Once out, was pretty pale and went straight to sit down when she got out of the shower. After a few minutes she started to feel a little bit better and was able to come out to the kitchen. We realized then that maybe it was a little too soon for the shower but she was a trooper and she did well.

Now the fun part, trying to do something with this hair of hers- super thick, not really short, AND has being in the hospital for a bunch of days. Anyone get my struggle?? lol This is what we had.

With a lot of patience and not much yelling at me, thank goodness LOL I was able to get all the tangles out and she was actually able to brush her hair now. That was it for the day. It doesn’t take much to wear her down still, and this was definitely enough for today. She went back to bed and pretty much just chilled out and watched TV for the remainder of the day. A well deserved chill out, in my opinion!

A mamma’s mind, a mamma’s creation! How to wash the girl’s hair without having her nearly pass out? Start with 6 towels, 2 pillows,a footstool, a blanket, a pain pill, 3 face cloths and the most awkward bent over position for what seemed liked an eternity!! (for her and mamma too!) But I didn’t dare complain about my back!! LOLThat is how a mamma gets it done! Much happier girl after this attempt on day 6 post op!!

On day 5, day 8 post op, home she was starting to feel a bit better. She was moving more and getting in and out of bed by herself now! Proud mamma moment- and one less she needed me to help her with!!! Independence is coming back!!. She wasn’t taking her pain meds through the night, only the odd night. At this point now she is taking Tylenol, a strong anti-inflammatory as well as the nerve pain pill.

Each day I am more amazed, only one week post-surgery and she’s getting along so well. She is so moving very slow but she’s up she’s walking around the house. She is still bothered by some pretty intense pain/tingling on her left side. She’s describing it now more as tingling and kind of like pins and needles not so much muscle pain right now. She finds the best way to relieve this is just simply by pacing the floors. It doesn’t make it stop but it certainly lessens the pain until it passes.

I was quite impressed that she decided to start working on some of her school work that the teachers had put aside. I’m happy to say that the teachers have been super supportive, offering to help her when she’s able to get back into school.

One week home and she has now been out for a car ride and is getting around quite a bit better but still gets tired quickly and is quite sore if she tries to do too much. She still not lifting, not bending all that well but she’s definitely moving around more.

Week 2 post op

It’s really been pretty relaxing and quiet the first 2 weeks home, not at all what I expected. I have sort of let myself slip out of my self care moments, so my head is getting tired and messy, time to start getting back on track really soon! I was a bit worried how the pain would be as week one she was still pretty sore- happy to say first week was the hardest. But not at all as painful for her as I was anticipating! She’s one tough cookie! The second week now she is moving around a lot better she started her stretches – which she hates – it is quite painful. This is normal and is what we were told would happen. So she’s doing them at her pace, she knows that the stretching is the key to a great recovery and outcome!

She realizes that if she pushes too hard it could just cause more soreness and that will just slow the recovery. She was feeling up to going into school at exactly the two-week post op day. I was so nervous about this, not because she wasn’t ready to walk and get around, but because what if somebody bumped into her or she got pushed accidentally ! Uggg my mind was so worried. She went with a friend, a bodyguard in my mind! I knew Emma would make sure she was safe and looked after! One class was good enough for her that day, and for me as well!

It was nice because she was starting to get frustrated with some of her school work that she wasn’t understanding. One of her teachers met with her after school and did some extra work as well. She’s able to get out in the car more often now. And the sharp pain that she was experiencing the first week has definitely lessened- just coming from time to time. She talks more about now muscle pain as opposed to the tingling. I’m assuming this is because she’s moving around more and she’s starting to do the stretches so the muscles are getting cranky. Thankfully it’s just the muscles that are cranky! LOL

As the days go on, I realize I am way over due in getting this post out. I wanted it out much sooner for sure, but well, here it is finally! I do have more pics of her incisions and her back, if anyone wants to discuss more in detail please do drop me a message! I’d love to share more and answer any questions you may have!

We are back to the IWK first week of May for her 6 week follow up. School is on the plan starting after Easter break, at least for one or two classes, she hopes! More to follow as this curvy journey continues! Be sure to subscribe and keep up with all our/my journey!

Until next time my friends, be kind to yourself and look out for others! xo

The day has come, our bags are packed and we are headed to Halifax! Surgery day has arrived!

Hard to believe the wait is over. All the prepping, all the stretching and all the waiting is pretty much over. Dropped her off at school to write 3 .. yep…3 tests the day before she leaves! She has really been a trooper, not a lot of complaining, just a tad when naggy mom reminds her of the importance of the pre-op stretching, but otherwise, she is fully ready for this next adventure!

bent but not broken…..lets do this!

She had her last horse riding lesson for a long while last night. I think this will be the hardest part for her, not being able to ride! The girls from the barn gave her a card and some chocolates. I think that is when it really sank in for her, that the time is here! The card they gave her was absolutely perfect and fits her to a tee!

Mom, on the other hand, is keeping it together somewhat, but am filled with anxiety, worry, and just plain ol mom emotions! I am super grateful she is being offered this new procedure (http://apifix.com/en/), and I’m sure it goes without saying that anyone in their right mind would have their own bag of emotions as one of their babies prepares for this big surgery!

I am sure the next week will be filled with many more rollercoaster emotional rides! Spending time with my 2 girls, many hours at the hospital, visiting with family in the city and a trip to visit my fiancee’s mom for her 80th birthday, while my daughters father pulls single parent duty for one night! That is providing that all goes well and mom can pull herself away for a mere 24 hours!

Next post will be post op, and hopefully filled with much good news to pass on! Asking for well wishes and strength from you all until then!

Until next time my friends, be kind to yourself and as always, look out for others!