Monday was uneventful. That's a very good thing.
We started with X-rays and she did surprisingly well. It's not easy to control a 1 year old especially when you're tugging on their legs. Rich and I took turns roaming the halls with her and looking at all the pictures once the playroom began to bore her. We met a lot of families and children while we waited. You tend to make friends almost immediately at this place. It's not like the usual where you go in, wait, wait some more and dive into your phone the entire time. You are constantly beginning a new conversation with a parent, speaking about your kids and what you may have in common with one another and where you're from or chasing your kid before she goes into a restricted area. :) However, the mood was a little different this time. I spoke with numerous people and honestly I felt like it was a competition. It made me very uncomfortable. Not everyone we encountered was this way, but the ones that were, we steered clear of.
Who's kid had it worse?
I will be the first to say, I am so humbled by the fact that we have it much easier than most, but it doesn't change the fact that what she will go through, no child should have to go through. Almost every time I opened my mouth it was as if they were waiting for me to stop speaking so they could quickly trample it with, "Well mine had this, or mine had that so it's much worse."
Respectfully, Get over yourself. No, really.
I am a smart woman (sometimes) and I see right through it. And I try to never do that to people. Being supportive means truly listening, not making it at all about you. When they are finished and they would like to know about anything we are going through, then I will tell them. I do it very matter-of-factly as well so I am not making ours seem less or more and likewise for their situation. If they don't ask, they don't really want to know. This applies to life in general.We are all here doing the same thing, seeing the same doctor so let's just be good listeners and be supportive of each other. I cannot stand when you try to uplift someone and they point no where but South. I get it. We all have our dark moments. I know them too well. Wanting someone to think it's worse or feel worse for you....well I just will never be able to understand those types of people. What I am learning is you can find strength in your weakness during those dark moments. The tiny bit of strength you have left may inspire another parent or bring comfort to a sweet child going through the pain. It amazes me all the time how I can write an email or post, or speak to a parent during my absolute breaking point and hear, "Thank you. This really helped me." No, thank YOU. You kept me from having a pity party so God Bless You! This entire experience is very humbling. I know so many others have it far worse than my baby girl. I see it everyday and even more so when we are waiting to see Dr. Paley. He has even said multiple times that he sees extreme cases everyday and Norah does not fall into that category. I thank the Lord for that every single day.
After about 4 hours of waiting, I said to my husband, "This is about the only place you can go and wait this long and still greet the doctor with a smile." This guy has it made.
There is no way with what he will do for us, that we would go in with anything less than open ears and a friendly demeanor. With that said, we saw him finally around 4. We got there at noon. :) Norah went in smiling, so we did too. A team of physicians entered the room and as humans I think we are hardwired to assume the worst. Nope, Superman was just training the world on what he does best. He reviewed her X-rays as she babbled back and forth with him. Considering she had no nap, anything other than crying was a relief. As expected, she will do her Hip surgery next year. There are multiple levels to this, and her case is very minimal so she will have a Pelvic Osteotomy. This is a lower grade surgery compared to a super hip surgery. Her hip is good, it just needs work so it's not a full reconstruction like the other. HUGE RELIEF. I immediately assumed the time in a Spica cast would be shorter because of this, but I was wrong. She still has to be immobilized in the Spica cast for 6 weeks. But in Paley's words, this is minimal compared to the rest of the stuff she will do, so that is both comforting and daunting at the same time. A week or so for surgery, come home, back in 2 weeks and you're good to go. Our goal is to schedule this mid October to early November this upcoming year so hopefully she is well for Christmas. This will all depend on Paley's schedule and assuming everything goes perfect. This whole conversation with him was such a humbling moment. The fact that we can drive there, do the surgery, stay a short time and come home is just crazy. More than half the families there have to board a plane, rent a house and all of the above. That's not an easy thing. Not to mention, they do that while their baby is having a Super Hip 1 or 2 or Super Knee so you throw emotion into it also. So you see? I know my kid has it "easy." If that's what you want to call it.
He reviewed her discrepancy with us again. Same as the last time. Two lengthenings are predicted. We will know more of an exact number with a standing X-ray in 6 months. She will most likely be in a 3-4in shoe lift by this next time year. It's difficult to picture, but I've seen kids with much higher ones and not to brag, but Norah dominates her shoe lift. It doesn't phase her a bit. Her upper thigh bone (femur) and lower leg bones (fibula and tibia) are all short. So we discussed rather than put an external fixator on both the top and bottom, we could possibly just stunt the growth in the right leg since the tibia discrepancy is minimal. That procedure is very minor in the grand scheme of things. He also spoke of her knee and that if it needed any work he could look at that when he's in there and make any tweaks he feels are necessary rather than do a separate knee surgery. I was sold on that for sure. Rich and I decided we would wait until after her 3rd birthday when she's about 3 1/2 to do her first lengthening, so about May of 2015. She has to be at least 1 year out of hip surgery. We originally thought the Fall season but decided to spend the Summer in West Palm Beach at that time. :) Two lengthenings....another humbling moment.
So even though the mood there wasn't as uplifting as the last, our family as a whole was uplifted, so that's all that matters to me. Not everyone will bring a smile to your face, some will stress you more than help you and people will say the wrong thing sometimes. It happens. Leaving there feeling humbled though, I can't even explain it. To be in our situation and be able to appreciate it, well that's just God's healing right there. If you can find a better explanation, I'm all ears. And I'll sure pray for you while you try to. We left with a definitive timeline and no good news or bad news so I'd give it a gold star.
On top of that, we got to hand Dr.Paley our first fundraising check. Quite a few donations have already been made and a lot of pledges have been made as well to participate in our "Classic fundraiser". We plan to raise a lot more for the foundation between now and February. So to those that participated in the recent raffles at Rich's tournaments and all of the businesses and sponsors that have donated prizes and product, thank you so much for your generosity. Every single proceed goes directly to the Paley Foundation. It's not too late to participate in the fundraiser if you'd like to. Visit www.fishingforthekids.com and you can donate now or make a pledge and have some fun while rooting for Rich! For every fish he catches, you can pledge a specific dollar amount per fish and at the end of the tournament we will donate every single dollar to The Paley Foundation. All of the details are on the website if you'd like to check it out. THANK YOU, THANK YOU, THANKYOU!
As always, thanks to all who read and keep up with our updates and care so much about Norah. She is a lucky little girl to have so many people care about her and support her!
