So glad I found you guys!

[Elisa]

So good to hear that your daughter is so much more active now that she's had her surgery. Yes, my son basically stopped all physical activity (except walk a few blocks back and forth to school) this past six months or even more b/c it just hurt too much. We'd go to the larger outdoor mall back home where they had the bigger stores and they were spread out across a fairly big parking lot and he'd always calculate the distance between the stores we wanted to go to and whether he felt he could walk or whether we should drive. That's pretty sad when a 14 y/o boy has to think ahead to see if he can make it certain distance and back again without really bad back pain. I felt so bad for him b/c other boys his age were all whizzing by on skateboards and bikes and just plain old walking around with their buddies.

He hasn't had the second surgery yet but he has not once complained about his back being sore since the first surgery where he had a posterior release and right away his spine and rib cage sprung back to a more normal position. The traction really helps to keep it that way too so I'm assuming once he has his rods put in that will keep his spine from bending and pulling his muscles so tight to the one side that it caused a lot of pain. He even had the bright red stretchmarks over his ribs b/c he was so rotated. Those stretchmarks have shifted closer to his back now and have actually faded quite a bit these past three weeks.

[Elisa]

I think 51lbs. is his limit so we're staying at that. When I added another pound he said his neck felt stiff and it was hard to move so I took it of; we're not going to push it. 51lbs. it is.

[Elisa]

So tall!

Today when I was transferring Elias over from his bed to his walker that he uses while standing in the shower, I noticed that he has really gotten tall. I had to reach up higher to hold his halo while we were making our way into the bathroom. I walked him up to the mirror to compare heights and he is definitely a few inches taller than me now. When we first got here three weeks ago he was slightly shorter than me and measured 5’7”. I swear he’s 5’10” now. I wonder if he’ll actually gain 4 inches? That would be unreal and what will the kids say at school? It’s going to be really weird. O_o

[jrnyc]

how nice for him!
i don't know if it is the same in Canada, but America seems to favor taller men...
when looking at who wins presidential elections here, that becomes pretty obvious...
it will be a nice bonus for Elias for going thru everything he has to go thru to get the correction needed!

jess

[Elisa]

Yes, I think being taller for a man is desirable. My daughter is about 5'9" and she wishes she were shorter b/c she'd love to wear big heels but she'd tower over everyone. I know Elias' sister is going to be surprised at how much he's stretched out and he'll definitely be looking dad in the eyes b/c he isn't overly tall: 5'10" at the most. Maybe when the traction comes off he'll shrink back down a bit, I don't know. His neck looks so long being all pulled up. I'm going to see if I can measure him here somehow.

[MJB]

His surgery is coming up so soon, best of luck with it! I hope he has an easy recovery!

[Elisa]

His surgery is coming up so soon, best of luck with it! I hope he has an easy recovery!

Thank you. He had a very smooth recovery the first time around and has not once complained about his back, it was his neck that was causing him issues from being stretched by the traction. I am confident that he'll have a relatively smooth recovery the second time around b/c a lot of the prep work has already been done to the spine as well as he's got 8 screws in place so he's a step ahead. The thing that he's really freaked out about is the dreaded catheter. Last time he had to have it put in for a third time and he had a meltdown. I hope it goes better this time. See, the things we worry about don't happen and the things we don't even think about do.

[laurieg6]

Hi Elisa,

I haven't been on this forum for over a month but I looked for your thread and have finally finished reading it. It's all really amazing - what you're all going through! I'm very impressed with Elias's and your own strength and courage and with your ability to maintain a sense of humor throughout this whole ordeal. I wish you all the best with the fusion on Tuesday - I'm sure Elias will have a great outcome and go on to have a normal teenage boy life. My son has done so, for the most part, and he is my hero for his ability to survive and thrive through many trying times.

I wouldn't worry too much about the catheter this time around. I'm pretty sure they will wait to put it back in until your son is unconscious and being prepped for the surgery.

It sounds like you just need to hang in there for a few more days. The sense of relief after his 2nd surgery on Tuesday will be so incredibly wonderful (within a few days).

Best wishes!!!!!

[Elisa]

Thanks for your comment Laurie. As another parent of a teen, especially a boy I know you can relate. I think both Elias and I have been handling this whole ordeal quite well too and as I've said before, the hardest part was getting here and actually getting something done finally. He's been the greatest little (well not so little now) roommate and we've had a pretty good time overall and he is so laid back about everything and we both have a similar sense of humour.

The catheter last time was such an issue b/c they had to put it back in two more times while he was fully awake and he said it hurt SO much. He had a meltdown the third time and I was pretty distressed too and really just wanted to leave the room til it was all over with but he asked if I could stay and then he asked if he could hold my hand so of course I did and it was really tough for me to see him so stressed which does not help in that situation. But, we're hoping things will go a bit better in that department this time.

He woke up this morning feeling awful: dizzy, nauseous, and he did throw up several times, sore eyes and had a headache. He slept for about three hours this afternoon and Dr. K told me to take a few pounds of weight off of him, had eye drops put in and some anti-nausea medication. He wants him well rested and feeling better by Tuesday. I have no idea what was wrong with him but he feels much better now.

~2 more days.

[Pooka1]

I saw that about his eyes and not feeling good on the blog. I think he will rally for Tuesday.

That was so endearing about him asking to hold your hand! You guys sound like you are making the best it is possible to make out of this episode.

You are in the home stretch. You'll be home soon. It will have all been worth it.

Just a little more...

[Elisa]

Yes, we're still on for Tuesday. It was just so weird how he woke up feeling so horrible. I had a cold last week so I thought that he might have it now too but the symptoms were totally different. The first thing I thought was 'ugggg, no, don't get sick now' otherwise the surgery will be postponed and we'll have to stay even longer. He seems back to normal now and is on his computer giggling. Weird.

As great as this whole halo treatment has been for his spine, I will be glad when they take it off and release him from it, and release me from constantly transferring all these weights from the bed to chair to walker and back again. 51lbs!!

On a side note, I am sleeping so well here and get into such a deep sleep and the dreams are crazy but I wake up feeling so good. Never expected that.

[leahdragonfly]

Hi Elisa,

I haven't been on the forum much lately, but I think about you guys daily, and I am glad that his second surgery is almost here. How wonderful that will be for you both to have that halo off!

I think you have an amazing strength and positive attitude. Before you know it you will be home with the rest of your family and critters. I can't wait to see Elias's post-op x-rays.

Take care, we are all pulling for you and Elias.

Fondly,

Gayle

[mariaf]

Hi Elisa,

I just wanted to let you to know I have been following along pretty much daily, even if I don't post all the time. You and your son are in my thoughts as I continue to be amazed at the strength and courage you both have shown on this journey.

Best,

[Pooka1]

Pip has a cracker!!!

http://eliasscoliosisjourney.tumblr.com/

So cute!!!

Plus I'm not making any unfounded accusations but I'd like you to consider the chin photo with the hockey jersey that you posted on 16 April from the other person was shopped. :-)

Two more days. Maybe you guys will be home by the beginning of next week. That's my hope.

[Elisa]

Awww, you like mon Pepe! He's the guy that got me started with the whole chinchilla thing. My husband found him outside under his van one morning when he was just a baby and we kept him, that was about six years ago. He's my favourite. :-D

Gayle and Maria you two have been extremely helpful and supportive throughout this whole ordeal and I truly appreciate that. I hope this whole journey that we are going through does somehow help others who are facing a similar situation.

Elias feels fine today and had a good sleep last night and we're both going to bed by ten b/c I want him to be well rested for Tuesday morning.

As far as going home, I've heard the Shriners bus travels down from BC on Monday to drop off patients and heads back up north on Tuesday. We'd stay Tuesday night in Vancouver and then head over to Vancouver Island and be home on Wednesday. We'll see if that's actually what happens.