We got back from St. Louis yesterday evening. Isaac had his second round of casting, and I am seeing some improvement already. It was sweet, for the few minutes when the casts were off, to be able to stroke his little legs, bend his knees, and kiss the spots where the casts had rubbed little blisters. He didn't like the noise of the casts being "sawn" off, but he did alright otherwise.
This time, the casts are actually bent at 90 degrees, so hopefully he will be able to crawl on his hands and knees again. He went back to his belly crawling because his first set of casts were bent at an angle that he literally couldn't crawl hands and knees. He hasn't resumed normal crawling, though. I'll keep working with him over the week. . .
Our appointment at Shriners was later in the morning than last time and we waited longer. It wasn't bad, though, as the waiting room is really geared for children and long waits. There were toys for kids of all ages,
and a Shriner who came through frequently with cookies and a "pet" panda bear. I'm so grateful that Isaac gets to be cared for at Shriner's! What a gift it is to have access to the best doctors in the country for his condition, and at no charge.
I chatted with other parents as we waited, and one mom told me that some of the Shriners Hospitals are having to be shut down for lack of donations. It is a tough economy, but oh, that made me sad. What would I have done for Isaac if not for Shriners? And there are so, so very many children there with conditions that are so much worse than Isaac's. Horrible, crippling diseases and deformities. I watch in awe as they walk by, brave and often smiling, making their way through life and treatments and taking it in (halting) stride. I'm sure there are harder private moments, but all those moments are ameliorated by the mission of the Shriners.
Isaac's problems have really opened my eyes to the goodness that there is in the hearts of men all around me, and it is a blessing to see it, as well as to be blessed by it.
As soon as my son, Isaac, was born, he had to fight for life. Unknown to us, he had a diaphragmatic hernia, and within an hour of his home birth, he stopped breathing. What followed was a two month stay at Arkansas Children's Hospital NICU. We were grateful for excellent care, and for his life.
In the midst of that drama, we, and the many doctors and nurses who cared for him, failed to pay much attention to his feet. They were cutely curled up so the top of his feet could easily lie flat against his shins. I kept thinking his feet would "uncurl" from their prenatal positioning at some point, but by four months old, they still folded all the way up and could not be manipulated downward past a 90 degree angle.
Isaac was seeing a physical therapist at that point for some developmental delays, and the therapist suggested we take a closer look at his feet. She thought it might be a good idea to work on stretching out the tendons, but wanted to make sure there wasn't a bony abnormality before starting that course of treatment. I wasn't overly worried and didn't move quickly to get a referral from his pediatrician. At his 6 month check up, I had the pediatrician look at his feet. She agreed that they were not "normal" and might benefit from the evaluation of a pediatric orthopedic doctor. I got the referral and went.
At the appointment, Isaac was found to have "rocker bottom" feet, and I was told to have the physical therapist work on soft tissue stretching, and that he would probably need some serial casting and braces. That was surprising to me, but I thought we'd beat the system and do so well with PT that we wouldn't need the casts. No x-rays were taken to verify whether or not there were bone abnormalities.
I went back to the physical therapist and we started work on soft tissue stretching. A week or so after seeing the orthopedic doctor, I started feeling like I just wanted to know more about what was going on. After hours of research, I determined that Isaac's condition was most likely congenital vertical talus, that it was a bone abnormality, and that not only would he need serial casting, he would also need surgery and then more casting and extensive time in leg braces. I was floored.
All this could only be verified with x-rays, though, and the orthopedic doctor had moved forward without taking any. The next day I called the orthopedic doctor's office, to verify my assumption. I talked with the nurse and asked if I could talk to the doctor about what specifically the doctor's diagnosis was for Isaac, and whether it was congenital vertical talus. She was very vague, had never heard of CVT, and insisted that "rocker bottom feet" was the specific diagnosis. I kept doing research, and called again, asking about the specific course of treatment that would be offered, and about why x rays hadn't been taken. Again she was vague and unwilling to let me discuss with the doctor. She said they did see kids with "rocker bottom feet" from time to time, and that the xrays would be taken at the next appointment. For some reason, I didn't feel satisfied with her answers. I wanted to discuss what was going on and felt I was being "put off". Perhaps I was a little scared at the prospect of CVT and wanted reassurance. I called again and asked the nurse if I could speak with the doctor about the course of treatment and the kind of surgery he would perform (I'd discovered that the techniques were progressing, and where it used to be that the whole foot was dissected, it had recently been determined that pinning the talo-navicular joint worked very well and was considerably less intrusive.) The nurse would never let me talk to the doctor, and had no answers about surgery. At last, when I called for the fourth time, nearly begging to speak to the doctor, she told me that she recommended my going elsewhere, perhaps back to the Children's Hospital. I was frustrated and confused, and just wanted answers. Though I continued to call, asking for xrays (if we could verify that it wasn't CVT, treatment would be much easier), the nurse continued to demure, and at last, she told me that the doctor didn't feel like he was up to date with his knowledge of the condition, and whoever we went to next would want to do their own xrays. Two months had passed by then, and I was back at square one.
We got another referral from the pediatrician, this time for Arkansas Children's Hospital. I didn't hear anything for a long time, and at last at the beginning of June, when Isaac was 9 months old, I talked to the folks in Little Rock. The earliest they could see Isaac was at the end of August. I was horrified. By now, time was very much of the essence. My sweet little boy was finally caught up developmentally, was getting more and more mobile, sitting, standing and crawling, and I knew that once treatment started he would be more or less incapacitated in full leg casts for at least four months. If we didn't even start treatment until he was more than a year old, it would be that much harder for everyone. And if we got to the doctor in Little Rock and they had as few answers as the one here had had, or were using an older form of treatment, I wouldn't want to follow through there, anyway, and we would be even further behind.
Again, I tried calling as a way to get answers. I called the office of the doctor Isaac was scheduled to see. I wasn't allowed to speak to the nurse, even about the generic question of what course of treatment the doctor used for CVT (if it was that--we still had no xrays!), or whether the doctor regularly saw patients with that condition, so I left a message with his assistant. She didn't call back for a week so I called again and left another message. Still nothing. At that point I needed a miracle. I felt overwhelmed by the possibility of CVT and frustrated by my total lack of ability to get the answers I needed. I felt alone in the battle, and like the medical community had failed me. Isaac had already been at Arkansas Children's Hospital for two months, and no one had noticed this issue. If it had been attended to immediately, we could have been done with the treatment already, and Isaac would be able to make developmentally appropriate progress by now, instead of having another huge hurdle ahead. What was a mother to do?!
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