I know, I know, long time, no post. For a long time there wasn’t a whole lot to post about, sort of “no news is good news”, and then when some other stuff came up, I figured I’d wait till she had a few of her appointments over with, so I could do an all in one shot update.
Heart – Heart is doing fine. She had her appointment with the Cardiologist and he saw no change. No change is good. They really don’t expect the hole to close any more than it has (which was a LOT), so at this point as long as those “anomalous muscle bundles” don’t get any bigger and cause pressure to increase, she should be just fine.
Size – Still tiny, but it’s all good. Pediatrician says since her development is on track, if not advanced, and she’s eating fine, as well as nursing, she is not worried and thinks it’s just the size she’s meant to be.
Allergies – No real change, but we didn’t expect one this soon. Still confirmed allergies to oats, eggs and dairy, and all the fun that goes with that.
She does appear to have a sensitivity to wheat and corn – they upset her digestive system if she eats them. They don’t seem to bother her if I eat them, thankfully. The allergist said that he doesn’t think those are allergies, but symptoms of an underlying GI issue, and the negative allergy test (skin and blood) confirmed his suspicion that they are not allergies. So he referred her to to a Pediatric Gastroenterologist at UVA. Ironically it’s the same guy we had considered seeing when she was having the reflux issues (that were resolved with cutting out dairy). She won’t get to see him until September, as he’s apparently fairly booked.
Torticollis – This is our current hurdle. We’ve noticed since Jade was a baby that she had a tendency to hold her head sort of cocked to the side, and slightly rotated. At first I noticed it in her photos, as I put them in the albums, and thought it was just a cute quirk at first, but then as I noticed in more and more photos, I started to wonder what was up, and then I started to notice it just looking at her. Not *all* the time, but a majority of the time.
I had mentioned it at her checkups, but she had so many other things on her plate with the heart and concern about her weight, that it took a backseat. I finally demonstrated for her pediatrician, and really had her take a good look – especially from the back, where it would be most noticeable, and she agreed she saw it, too. She referred her to a pediatric Physical Therapist at RMH Rehab and the PT confirmed the diagnosis of Torticollis.
Torticollis (also called “Wry Neck”) is a condition where the muscles one side of the neck are shorter and/or bulkier. There are many possible causes, but it can often be congenital from some sort of injury to the neck during birth, where the muscle is torn or stretched and as the injury heals, scar tissue forms, causing the muscle to heal shorter and thicker, pulling the head to one side. I can look back through Jade’s photos and see it pretty much all the way back to the beginning, so I’m guessing it’s something that happened during her birth.
So, Jade is going to weekly Physical Therapy sessions, which she just *loves* (note the sarcasm). Her PT works on her neck muscles on the affected side, to help them become more relaxed, and we also (both at PT and at home) work on encouraging her to hold her head up straight. She has had 3 sessions (4th today at noon) and seems to be responding well. She *can* hold her head up, it’s mostly just a question of breaking that habit now and retraining those muscles.
Just to be safe, her pediatrician referred her to a pediatric Neurologist, to be sure there weren’t any other issues caused by the neck. Sometimes, especially if it has gone untreated, a child’s ears and eyes can begin to shift, to compensate for the tilt, and this can cause other issues. Another issue that sometimes comes up is something called Plagiocephaly. This is caused by the child lying on one side of their head more than the other (due to the neck issues and preference) and can cause the head shape to change. Sometimes Plagiocephaly can be accompanied by premature closing of the soft spots and skull sutures creating intercranial pressure as the brain grows and the skull has hardened and cannot grow.
As I suspected Jade has none of these problems. She does have some *slight* flattening on one side, but it’s so slight that the Neuro guy said she’d be a great advertisement for how awesome a child’s head can look after wearing a Plagio-helmet for remolding. Both he and her PT just suggested making she she sleeps on the other side of her head to prevent any further flattening. It’s absolutely un-noticeable with her hair. I am sure at least part of this is due to the fact that she is an absolute Wiggle Worm, and has been since birth. She never stayed in one place/position long enough to get any significant flattening. Of course I know the real reason is God, and I thank Him, because MOST kids get diagnosed and treated within the first couple months of life. Jade is REALLY late to be treated for this, and if there had been issues, some of them would have been too late to fix totally.
One thing that he did mention is that if PT doesn’t work, and we can’t get her to keep that head up, they may need to see if the issues could be caused by an actual twisting of vertebrae in her neck (another less common cause of torticollis). So as long as PT is working we’re going to assume this is NOT the issue, but if it doesn’t she may need to see the Neurosurgeon to have a CT scan done. I told him no offense, as he seems very nice, but I hoped we never had to come see him again. He agreed.
So that’s where we are. Heart is fine, allergies unchanged, PT going well, and waiting to see about the Gastro Intestinal issues. But I’ll take PT and GI issues over worries about open heart surgery any day. And really you’d never have any indication of what she’s dealt with to look at her go, go, go. She’s a little monkey. She can now crawl up into our dining room and kitchen chairs, and then crawl up on the tables. She’s a mischievous little girl and FULL of energy. I guess she has to be to keep up with her big brother. They’re a riot to watch together. 🙂
Thanks for all your continued prayers and well wishes!
