No Pain No Gain

Last Wednesday, Helena went into the hospital to have Quengel casts put on her legs. The goal of this procedure is to gradually straighten her knees over time without having to subject her to a surgery. Most kids with knee contractures do have surgery; in fact, there are kids with AMC who have had needed a dozen or more surgeries by the time they have reached Helena’s age. We have only had one – and it was an outpatient procedure. We have spent time with doctors correcting club feet, determining whether her hips or her knees are a bigger issue and if surgery is needed, whether or not her quadriceps can be strengthened, and whether or not a neurological cause is part of the issue- which impacts the efficacy of surgery. If we can avoid it, we prefer that any surgeries are put off until Helena can have a voice in the decision -unless they are determined to be both absolutely necessary and beneficial to her long term quality of life.

Quengel casting is non-surgical, and appealed to us because it was not as invasive and would prevent the buildup of scar tissue, which can lead to problems over time. Furthermore, it will improve her posture and (I hope) will enable her to utilize muscles more effectively and strengthen them.

Helena went through the casting process without a hitch. She woke up very angry – we could hear her fussing two big rooms away. She was grumpy from the anesthesia, VERY angry about the IV, and insecure about the casts; but once she got the anesthesia medication out of her system, her mood improved.

She has also decided through all of this that she HATES taking medicine. Apparently, the Tylenol that is provided through the hospital is commonly known by Scottish Rite patients as the nastiest substance known to mankind! She would rather be in pain than taste it! 😂😂. We went and bought our own in a different flavor so that she would take it, along with ibuprofen as needed. Still, every time the nurse asks if she is in pain, she says “no,” even if she is hurting. Then when the nurse leaves, Helena will go on about how she hates the casts and wants them off. She is a tough (and extremely stubborn) little thing. Sometimes that makes her a little hard to deal with! We have resorted to bribery in various forms.

Probably the biggest complaint she had the first day or so was not being able to move as freely as she had been with her KAFOs. She wanted to stand and move around as she had been doing. We got her a pair of cast shoes and she was able to do that when she wanted.

The first three days of turning the bolts on the hinges were also relatively easy. But since Saturday, the turns have become much more uncomfortable. On Sunday evening, she had a terrible time sleeping to the point that she continually woke up wailing and screaming. The night nurse had the doctor on call come in and check her casts. She has developed a lot of pressure above the front of her knees, especially the left one. Nonetheless, the pressure appeared to be normal, so we continued.

Helena continued to complain throughout the day yesterday, and hasn’t eaten much. The doctor halved her turns in the morning, and did not turn the right leg at all last night. Today, she slept much better, and the doctor decided that she would like to reapply her cast and check for pressure sores – and that since her left leg is extended fully, she will go ahead and apply a hard cast on that one. (Yea!). Hopefully, these changes will help her be a little more comfortable.

With the pain being the way it is right now, she keeps telling us and the doctor, “I don’t want these on my legs. I want my normal legs. Mommy, please take these things off.” As a mom, these words are hard to hear. The ordeal seems pretty impossible right now. This is hard stuff to handle for a four year old child, let alone a mom. But we all know that if she can have straight legs, it will be so worth the momentary discomfort.

I keep telling her how strong she is – and her response is, “No I’m not. See? I don’t have bumps.” (Meaning muscles in her arms). I’ve tried to explain to her that sometimes being strong doesn’t mean big muscles but instead big courage- she doesn’t quite understand that concept.

But as you can see, it is very clear that we have come a long way from her first year – and you don’t have to know what courage is to have it. In fact, she has a lot to teach the world about what it means to be strong.