Neurology Clinic

Well we had our neuro. clinic yesterday. Everything went well, Kaitlyn was happy all day. Actually I haven't seen her so talkative (baby babbling mostly) in a long long time! But it was good as she was really loud and almost annoying while visiting her neurologist! We had to shush her several times, and as she just grinned at us, we had to bring out Dora DVD's and she was a happy (QUIET!) girl :) Kaitlyn's neurologist seems pretty impressed with her. I think that he is amazed that she is even still alive, but also impressed with the condition that she is in. He always remarks on her movement, and personality. I think it was his clinical nurse that commented on the condition of her skin, which is really good, but we have to do a bit of work to keep her that way. We have to be extra careful to dry her really well, we can't use scented products, and she takes her acidophillus every day to combat the yeasty issues so common to our SMA children. Kaitlyn's neurologist also always checks her back and comments on how straight it is; she has no visible curve as of yet. He seems a wee little concerned about her cognitive abilities....but I guess if he only knew her like we know her ;0) She knows how to get what she wants, there's no dust on this girl!

Our appointment with OT/PT went fairly well. OT has requested the aid of a couple more specialists to figure out seating for Kaitlyn. She says that the rep. they are getting help from is a fan of Permobile products and he's in Ontario. I'm glad because I like the quality of the Permobile products and the versatility of their products. OT is nervous about funding as the Permobile chairs run upwards of 20,000! Oh well if that's what she needs, then we'll find a way! PT was really concerned about Kaitlyn's ankles. My husband and I have been after proper bracing for a year now. No amount of stretching alone is going to prevent contractures when there is no muscle tone to aid the stretching! Now her ankles barely meet ninety degrees, and her feet rotate out...toes in. So now we have to have some sort of specialized orthosis made to hopefully help correct this problem. They don't seem too confident that it will help much! Even if we can keep her from getting any worse, I'm willing to try.

Our Social Worker started off our day with a birthday cake for Kaitlyn. I wish that I had thought to take pictures! A Dora Cake and Kaitlyn was appropriately impressed! It was very thoughtful and sweet of her. We should be the ones buying her little goodies as she is a god-send. She helps find us funding in all sorts of interesting places!! She is supportive on a level that takes a lot of the stress out of our lives. She arranges meetings for us with our doctors, makes sure that Kaitlyn is always receiving the level of care that she deserves. She's always suggesting people and foundations that can help make our lives easier. I'm sure there's more she does...she listens to me rave whenever we are in hospital or are having a difficult week.....this has happened quite a bit. Sorry Hali!

We didn't get to see our dietitian. We were running behind the whole day. The visit with our pulmonologist went really well, I thought. I was a little nervous going into it, but he really seems on top of things and on board with Kaitlyn's protocol (Both in hospital and out). He seems a little concerned with how much work she is for us, but seems impressed with how she's doing and how we're coping. He listened to her lungs and says she sounds clear (he spent a good deal of time listening!). We have also decided to try saline nebs to see if it helps Kaitlyn's thicker secretions. He was of two opinions, either it will just make her wet causing more secretions or it will help loosen up the thicker secretions so we can cough them out and go on with our day. In effect helping to dry her up a bit. We are of course hoping for the latter. Some days all I do is sit close to her and suction all day long....this makes house work and tending to the boys hard to do!

We had Kaitlyn's bloodwork done to check the higher dosage of enoxaparin. So far everything looks good! We will see if the increased dose does anything to her bloodclots. We have another ultrasound scheduled for mid-December, so I'll let everyone know how it goes! Keep your fingers crossed until then please! I really hate giving my daughter subcutaneous injections twice a day. She has very colorful legs now too!

There is another SMA family in Halifax. Their child is a Type 2 and while the course of a type 2 is a little less severe than a Type 1 it is still a devastating diagnosis for any family to have to receive. Our thoughts and well wishes are with this family. We will be doing all that we can to support them in their quest to improve the quality of their child's life!

I hope all our friends in the States had a wonderful Thanksgiving filled with precious memories.
Keep up the good fight....as the saying goes!