Tuesday, November 16, 2010

Various appointments

Avery has seen a few different doctors and therapists in the past couple of months. Here's who she saw and what they had to say:
  1. Dr Clarke, the endocrinologist. You may remember that the developmental neurologist and the ophthalmologist both told me I needed to make an appointment with an endocrinologist after Avery's diagnosis of septo-optic displasia. SOD is often associated with hypopituitarism. The resident and Dr Clarke both looked Avery over and asked lots of questions, and concluded that at this moment in time, she seems to be perfectly normal and healthy with regards to hormones and growth, etc. They sent us to get blood tests to check hormone levels just to be sure. Avery was not happy about that. At all. All the way down to the lab she was saying "But I just want to go HOME! I don't need to have my blood tested because I AM healthy!" As soon as she walked in and saw the special little bench with the arm rests for drawing blood, she started crying and crying. But the nurse who drew her blood was super fast, I was very impressed, and it was over very quickly. The resident called me a few days later to let me know that everything came back normal, just as they had expected, and we just have to go back in a year to do the same tests again.
  2. Tiffany, the occupational therapist. I already mentioned how amazed Tiffany was with the progress Avery has made since she last saw her in February. She was extremely happy with how much she had improved with her hand-eye coordination, upper body strength and dexterity, problem solving and tolerance levels (as in, she doesn't immediately get frustrated when things don't work out perfectly anymore). We are going back the first week of December and we'll see whether we think we even need to see Tiffany at all anymore.
  3. Dr Brown, the physiatrist. Dr Brown is not very happy with us. We stopped giving Avery baclofen. Again. We've stopped putting Avery in AFOs. We've stopped trying to make Avery walk. We no longer make her use her quad cane, and we don't even really encourage the posterior walker either. We've stopped intensive stretching. We've stopped weekly physical therapy. We've stopped hippotherapy because we weren't approved for it anymore after quitting PT. Basically, we have gone against pretty much everything he has recommended. We have come to an agreement that we will spend the next 6 months really giving ABM therapy a real trial, and that if we haven't seen marked improvements by the end of that period, we will seriously think about going back to all of that.
  4. The Dentist. When we went to see the dentist in April, Avery seemed to be fine with it all, right up until the moment it was her turn to sit in the chair. She then freaked out, and the hygienist was unable to even get a look at her teeth! So I was concerned that it might be the same this time. But she was an angel! She sat in the room with me while I was having my teeth checked and cleaned, and while I was still busy with that, the other hygienist came in to get Avery, and to my surprise, Avery was perfectly to get up and follow her into the other room! Not only that, but she didn't mind getting into the chair and she was fine with everything that she asked her to do!! It was super cute listening to her conversations with the lady while she checked her teeth! She did such a great job, and came away with a bag full of prizes :) I had also promised her a treat if she did a good job, and she picked ice cream, so we went to dunkin donuts on the way home and got ice cream and hot chocolate :) It was really fun :)
  5. Sarah Roberts, the neurosurgery NP. Our whole little family took a trip up to UVa for Avery's routine MRI and neurosurgery appointment! Avery was absolutely AMAZING for the MRI!! It was the first time that she did it without screaming. Before we got there she picked Daddy to go into the machine with her, but once they were in the room, she changed her mind and I got to go in with her instead. She still was scared and didn't want to lie down, and when I lay down with her she wrapped her arms around my neck and held on tight the entire time. But the preparation part was the only part where she whimpered at all, once the scan was underway she was extremely brave! We pretended we were an underground train going into the tunnel, and she even talked to me very calmly a couple of times while we were in there and said how glad she was that we were friends there together :) She didn't loosen her grip on my neck even a tiny bit the whole time, so I could tell she was still scared, but she was so brave and good! And it only took about 4 or 5 minutes. She was excited to see the pictures when we got to neurosurgery, and we were too because they showed that her ventricles look exactly the same as they did in April! I didn't even realise for a minute that the two pictures on the screen were from two different occasions because they looked the same. So her shunt is doing it's job perfectly it seems! Hooray :)


Talitha said...

Wow, I don't know how you juggle everything going on in your life!
Tell Avery she is so brave, when I went for my MRI scan (last November) I completely freaked out and had to make and appointment for an open MRI scan in London instead, and even then I had my mother with me and I was still scared - I hate small spaces!!!

Michelle said...

Good news all around! It's great to see Avery doing so well. And it's always wonderful to go to a doc and hear "perfectly normal"!

Thanks for the reference for Tiffany, I have passed it along to my brother.

Anonymous said...

Sounds busy!

I love the last appt especially...a stable shunt...