This morning I realized that it was our fiftieth day of turns! It was exciting to think that we've survived, endured and made it this far! When I wonder how I can get thru a moment, or day or the next month I focus on all that we have endured thus far; and it gives me the strength I need to press on. It's hard to believe its been eight weeks since the surgery. We're starting to feel the strain, but excited that we can see the end (of the lengthening part of this journey).
Physical therapy was hard today; on both of us. It's a different kind of pain, but we both feel it. Amaya's is obvious, because it hurts her body, but for me it hurts because she's my daughter. Watching her in pain, is tough and painful. Today was especially hard for me. Amaya has a high tolerance for pain and doesn't usually cry or whine for others (doctors, therapists, etc), but when she did her bends today (and the past couple of days) she started crying. Not just a small whimper, but the "ugly cry" as Oprah calls it, where you have tears and snot dripping down your face. Seeing her like that is very tough, and makes me cry. I try so hard not to cry at our appointments, or in front of her, but man its tough! It was extra hard because I know that we're entering the hardest part of the lengthening, and that she will continue to have pain until its all done.Now it wasn't all terrible; she had fun as well. She practiced throwing balls into the ball pit, got into the ball pit (so did Melissa). Amaya told Melissa that the skin by her pins hurts sometimes, and Melissa suggested that when we give her a shower and take the gauze off that we push the skin down. She said it will probably hurt, but then feel better during the day, because it won't be pulling on it. We got home late tonight so we didn't do it today, but I'll do it tomorrow. During the knee bends they tried to distract Amaya by having her think of puppy names. She thought of nine, but you could tell she was distracted because one was "super glue." Kim pushed Amaya's knee and held it to a count of fifty. I got tissues and wiped her nose and tears away (and swallowed my pain). For the next one they asked Amaya to count down from thirty, but as Kim started pushing on Amaya's leg, she asked,"what's before thirty?" Melissa told her, then she kept going. The pain, distracts her from her thoughts as much as her thoughts distract her from the pain. She was only able to get her knee bent to ninety five degrees today, which isn't great, but it isn't terrible either. Melissa said that we'll probably start seeing numbers in the nineties, but it may get higher by Thursday or Friday. But, she was happy that Amaya was able to stay in such high numbers for as long as she has. Melissa also suggested that I push Amaya's kneecap toward her toes at night, to stretch the patella. She's going to try taping the knee tomorrow. Today she only put on a small piece of tape on Amaya's arm to see if Amaya was allergic to it. Melissa asked Amaya if she wants to do the bends first tomorrow and then move on to the other stuff. Amaya said yes, so hopefully the change in routine will be nice for her. It seems like it would be difficult to be in Kim and Melissa's shoes, to be pushing Amaya as they do. I told Melissa that its so hard to watch, she said that it must be tough on a mother. It is, but I imagine its also tough on them; no one likes to see another person suffer. I just keep telling myself, that it's "pain with a purpose." My sweet Amaya continues to endure, and thrive.
After therapy we had about an hour before our appointment with Dr.Nelson. I took the girls down the street for some frozen yogurt. We had about an hour wait before we got back into a room (another mix up with the x-ray). When the assisting surgeon came in (I think his name is Allen, but Dr.Nelson called him Juan, which made us all smile), he asked if we would mind if he shared our blog with other families. I said, "Of course not." I learned so much by reading other blogs and I hope that ours can help others as well. This is not an easy journey, so if we can help lighten the load for another family, we're more than happy to do so. I keep telling Josh that they should have a parent to help and guide you. Almost like a referral service where parents can volunteer to help other families who will be going thru what you are going thru (I guess that's what I really want this blog to do for other families; help make their journey less difficult, less confusing, less isolating).
Allen looked at Amayas x-ray and said that her hip looked really good. He said that if one of us had a hip osteotomy we'd be in bad shape, but that kids do well with it. It's true, even though she does complain of discomfort and pain, all in all she does really well. We told him that Amaya's bed sore was starting to bother her again. He said the best thing to do was to keep the pressure off of it (so when she's sitting or laying down, we have it propped up). Allen went to go get a ruler and when he returned Dr.Nelson was with him. He measured the x-ray and it showed that she had gained 42.1 mm. The rod showed 52 mm (about 2.04 inches). He said that the measurement on the rod is more reliable because the one on the x-ray depends on how far the picture is taken. Dr.Nelson said that Amaya's hip had healed nicely and that she could start walking without her walker. He said that we only had about one more month of lengthening to go. Amaya smiled so big when she heard that. Even though a month can be long, its nice to have an end point in sight. He said that we can continue to do four turns a day. He was quite happy with the new bone that has grown, the pins and how well she's doing. We mentioned how rough our nights have been and he said that after two weeks and then up until close to the end of lengthening is the easiest part. The closer we get to the end, the more difficult it can be. He also said that each person tolerates and responds to it differently and that it also comes in phases. Part of me wants a quick fix (a pill, or something to make her pain go away), but I know that isn't' possible. Sometimes, just voicing our concerns and knowing that its "normal" is comforting. If he's not concerned, then we don't have a reason to be either. Dr.Nelson had a smile on his face that we all felt. It was undeniable how happy he was with her progress. And that's always a good sign.
Dr.Nelson said that he'll be checking the blog for videos of Amaya walking and suggested to Allen that he read it too. I think its pretty neat that they take time out of their busy schedules to read it at all. We're so fortunate to have such wonderful people caring for Amaya. Her doctors and therapists, nurses, and all the behind the scene people who help so much. Before we left I asked Dr.Nelson if the girls could have some gloves to use when they play doctor at home (Amaya had reminded me several times that she needed more "doctor" gloves). He gave us a small pile (the girls were so happy!). Amaya put hers on before we left the office. And Lidie asked me on the way out, "mom, are those my real doctor gloves too?" I smiled and said, "yes." On the way out Amaya smiled and waved goodbye to Dr.Nelson. We'll be back in three weeks for our next check up.
It was such an eventful day and I'm worn out. I'm still tired from last night's lack of sleep. The good thing is that Amaya has been asleep for almost two hours now and has been sleeping soundly.
Amaya throwing balls into the ball pit. They had her try throwing while balancing on one foot, like a flamingo, then by stepping (like when you throw a baseball). She had really good balance and strength during both.
Melissa jumped into the ball pit, and made Amaya's day. I almost didn't put the picture in, but it made Amaya smile so much I couldn't resist. Hopefully Melissa doesn't mind too much. She's such a good sport and makes therapy not only bearable, but enjoyable for Amaya.
Kim helped Amaya balance as she tried to kick the balls in the ball pit. She kept trying to just use her right leg, but they reminded her to kick with the left one instead.
Then finally Amaya got in the ball pit. It's her first time with her fixator on, and she had lots of fun.
Here's the x-ray from today. You can barely see the area in the hip where Dr.Nelson worked on it. Dr.Nelson said the pins all look really good, and the new bone looks good as well. I can't believe her bone is so long.
Here's a close up of the new bone (the gray area between the break). It's pretty amazing to look at. Amaya said "oh golly! That's really cool how much it's grown." Then asked where her new muscles were, but I told her that those don't show up on x-rays the same way that bones do. But, we can't forget that those have grown too!