Like I mentioned, we were able to quickly get in to see a pediatric orthopaedist last Monday at Texas Scottish Rite Children's Hospital. They have a highly ranked and skilled orthopaedic team and many people I talked to suggested that we go there.
Our appointment was at 2pm and we arrived a bit early to do paperwork and nurse Beau before he was seen. The staff was so accommodating and led us to a cute Mother's room that housed rockers and changing tables stocked with supplies and decorated to the theme of Peter Rabbit. We were all amazed with the child-centric decor of the hospital and my mom kept thinking that she needs to bring her other grandchildren there just to see everything and play! They've done a great job of making the hospital seem fun.
We saw a PA on the orthopaedic team first that was super knowledgeable and did a quick visual exam of Beau. She asked us about family history and what we noticed so far with Beau. She agreed that his left leg looks longer and fatter than the other and that his left foot is longer as well. She asked me which leg I thought looked normal and I told her that I'm used to chunky babies so his left leg looked normal and she agreed. She did confirm our suspicions and said that he has either hemihypertrophy (overgrowth) or hemiatrophy (undergrowth) but there really isn't a way to tell the difference and it doesn't affect how we move forward.
At this point, it had been about two hours since Beau had eaten and the PA said since his stomach was emptying, they could do a sonogram of his abdomen and an X-ray of his legs for a base reading. We made our way to radiology for the sonogram.
It got a little scary at this point. We didn't know how in-depth this appointment would be and while I was happy they were being proactive, it is quite unnerving to carry your 7 week old baby into a room to be scanned for cancer. It was so odd having him on the table and watching the screen looking for something bad. The last time he had a sonogram was when he was in my tummy, and it was always such a happy day when we got to see him in there.
As the tech scanned him, we had to hold him still and keep him happy. The scan lasted about 30 minutes and it was quite difficult to keep him happy but we managed! He only let out a few true cries at the very end. I can't imagine what he was thinking throughout it and honestly, I don't want to think about it! The good news is that the scan was clear and everything looked perfectly healthy. Praise God!
After the scan, I snuggled him hard, nursed him, and rocked him back to sleep. We then made our way to the X-ray room. Again, a little scary but not as much since they were just measuring his legs and not looking for anything 'bad'. The X-Ray was much easier than I thought it would be. We just held his arms while the tech held his legs and they took a quick picture. It just took a minute!
We went back to the exam room and waited to meet with the doctor. He came in with the PA, a resident, and a nurse, so it was a little overwhelming! He was super knowledgable and talked us through everything. He told us that the scan came back clean and that he only sees the overgrowth/undergrowth in Beau's legs and not in his arms, skin, face, organs, or anything else. He told us that they see a lot of "hemi" patients and in many cases it's a completely manageable condition. He reassured us that the risk for cancer is extremely rare but well-monitored with routine sonograms.
Going forward, Beau will have a sonogram every 6 months until he is about 8 years old to check for signs of cancer. He will not have to have bloodwork as we had suspected because the sonogram will be enough to catch any cancer early enough and bloodwork is not as reliable in detecting cancer. We will proceed with life as normal until we know more about his development. We were told that he will crawl, walk, and play on a normal timeline and that life will not change much for our sweet baby boy. We don't really know what the future holds as far as his bone development, we will kind of just have to wait and see. There are millions of people (the majority, actually) that walk around with uneven legs and we were told that it isn't something that would be addressed until the difference in legs was more than 3/4". At that point, the body's alignment starts to get off and we would look at lifts in the shoes and/or surgery once his skeleton is mostly developed. We asked him about seeing an oncologist (which some people had recommended) and he said that wasn't necessary. He said at the moment, Beau is not a cancer patient and Scottish Rite is doing all of the necessary monitoring to make sure he hopefully doesn't become one. We had all of our questions (for now) answered and left the hospital tired but relieved after 5pm.
All in all, we were all pleased with the hospital, the staff, and the details we learned. I'm relieved to have the reassurance of a real, live health professional (rather than the internet) and have a plan set in place for my child. The doctor and especially the nurses were so helpful and I'm looking forward to watching them care for Beau in the years to come. I am confident we are in good hands!
We are keeping our appointment with the geneticist next week and I'm curious to hear what she says. It will probably be a long appointment but hopefully we will learn something and feel even better about our future.
I'm sorry for the long post but wanted to keep everyone informed as well as keep a record for us to look back on in the future. Thank you again for your continued prayers and advice, we so appreciate it!
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