part two ... continued!

We had the Wednesday to ourselves and it was unfortunately not a very nice day, but we went to the American Museum of Natural History, which was pretty cool! Dinosaurs were HUGE ..... who knew!?! ;-)

Thursday 29th October

We'd managed to be squeezed into Dr Feldman's (chief orthopaedic surgeon, who is very experienced with the HSAN disorders) hectic schedule and had been given an appointment for this morning. I hadn't slept much at all overnight because I kept worrying about what he was going to find .... and what I had missed, despite being so cautious and observant with her at all times! :-(

I explained to Dr Feldman why we were there, that Alyssa was being classed as having one of the HSANs (but obviously not any of the main five that would be easy to predict the type of joint problems she'd get) and that Dr Axelrod had been concerned about her knees and hips. I also explained that I had previously been worried about her hips because I felt that her L hip was partially dislocating on a few occasions when I'd changed her, but that she'd had xrays taken and the orthopaedic specialist here had said her hips were perfectly normal. Dr Feldman nodded and asked to watch Alyssa walking, which Alyssa was not entirely co-operational about but was eventually persuaded into doing so by her big cousin! He said he could tell immediately that her hip wasn't dislocated, but that he was also concerned by her gait so would have further xrays done to see exactly what was going on.

The radiographer was not the most helpful man, and didn't seem to understand that Alyssa could not stand still long enough to have the xrays done - despite me trying to make that clear to him several times, and he got annoyed with her after several xray attempts. Between Alyssa's constant itching and her inability to stand for very long (as well as being TWO, AND SCARED!), she was fidgeting constantly and wanting lifted up and he did not have much patience for any of these things unfortunately. I ended up saying that he would just have to lie her down for the xrays - but he had obviously just decided that as we said it at the same time, and there was no problem after that. I had to hold her so she'd stay still, but she understood and wasn't having to weight-bear while he got the machine in position so she was perfectly happy! The whole thing could have been over much more quickly if he'd just let her lie for the whole lot, and made it less stressful for all of us! :-(

Dr Feldman came back in and reviewed the xrays and said that he was actually very happy with the results. There are no orthopaedic problems at the moment, and that she is just very lax (which we knew) and that this - compounded with the lack of pain sensation - has caused her to be very unstable, so she has learned to walk in whatever way she can. She does have profound lordosis (curved/arched back posture) but no sign of scoliosis (where the spine actually begins curving) so she needs fairly intensive OT work, and for us to keep an eye on her positioning.

He went on to give us advice for the future in what we need to be looking for, what we need to avoid her doing and what advice NOT to accept from other doctors who are not experienced with the HSAN. He said that the HSAN are such rare children that they need to be treated very carefully, and that things that will work for every other child will not do for an HSAN patient. Any time I am worried about her joints/limbs/fingers etc - no matter how small the concern may be - he said to make sure I get it checked up correctly, and not accept any doctor saying "it will probably be fine" ... because it won't! The HSAN are so prone to orthopaedic problems and they cannot be fixed by "regular" means that they require specialist intervention at all times.

The things I need to watch for with Alyssa specifically are:

* Her posture when walking - Melissa is helping me correct this, with the program she's created and the exercises should help this. Alyssa has also already been measured for a specifically-designed lycra bodysuit by our orthotics department, which she has still to get but which should also help to correct her posture.

* Her posture when sitting - she is not allowed to sit on the floor, because of her extremely lax joints. This puts too much pressure on joints which are already too flexible, and puts strain on them which we need to avoid. She also sits most of the time with her head on her chest, and we are to correct her whenever we see her doing either of these things - or with any other "weird" position we see her using. We do already do this, but he made it clear how important these things were and my MIL pointed out yesterday that Alyssa actually self-corrected her posture ... just as MIL was about to tell her! So that's progress already!

* That she should only be allowed to do "low-impact" or "non-impact" sports, such as swimming, because of the high likelihood of unnoticed fractures, as well as the constant pounding that she will get from these activities. Swimming is the best (and usually the only!) sport that the HSAN can take part in, and it also helps with their proprioceptive abilities so it is good for them in an overall sense, as well as for their joints!

* That we should have yearly xrays taken of her lower extremities and spine, to monitor for problems that can then be detected early. Dr Feldman offered to assess these and stay in contact with us via e-mail, so we have an expert opinion on any areas of concern.

I was so relieved that there was nothing "new" wrong with Alyssa, and that I hadn't missed anything! I had to e-mail Alyssa's paeditrician straight away also; because I'd updated her on Dr Axelrods' concerns, so she thought she'd missed something too (something I doubted because she doesn't miss much!) so she was also glad to hear that everything we thought about Alyssa's gait was actually correct! And that there is nothing underlying that we haven't picked up on! :-D

Friday was Halloween so we did some "halloweeny" things, went to Central Park Zoo, bought outfits (except for Alyssa, who already had her Tinkerbell costume packed for the journey there!), and attempted to attend the special NY Halloween parade at night. Unfortunately; it was raining like there was no tomorrow, so we couldn't get near enough to see the parade, Alyssa was screaming because the rain was getting at her (she can't tolerate rain on her legs/arms etc, and wouldn't keep the buggy rain cover on because she overheated so quickly with it on) and we ended up being out in the street, hiding under lots of scaffolding ... with MANY other wannabe party-goers! Then got stuck in traffic for an hour before getting home drenched, and missing the parade on tv too ... so we saw none of it at all! Lol!

Sat/Sun we had off so did the NYC bus tour and saw the Empire State Building (the "castle" that Alyssa loved so much!) then the Statue of Liberty - both of which were awesome! I do vaguely remember seeing them last time I was in NY, but was also suffering from the joy that is HG (Hyperemesis Gravidarum) so I was very dehydrated at that time and didn't even realise how sick I was. I was hospitalised a few days afterwards, where it then became apparent I didn't "just" have morning sickness! This time round, the trip was MUCH MORE FUN and I actually experienced NY like it's meant to be! :-)