Tuesday, August 24, 2010

Very long seizures again...

Well it's not unexpected because we are decreasing one of her seizure meds but Kiera had a 31 minute GTC seizure on Sunday, the day before she had a very hard GTC that lasted 14 minutes. They are so strong I am surprised that she has not broke anything yet with them.

With lowering the Lyrica, she has lost a little weight. Kiera is now at 102 LBS. I think that she will continue to loose as we go off the lyrica but we are not alarmed, neither my husband or I were overweight in our young 20's.

We have brought in a Palliative care team to help with the future needs that Kiera might be facing. Kiera has restrictive lung disease on the right, secondary to neuromuscular scoliosis. As her curve progresses her lung capacity will diminish and Kiera may have more pain from her back. Surgery is always an option, but it's not for everyone. We will know more in December after her Ortho appointment as far as where her curve is.

We have been working to get Kiera back up into her stander but she is not a big fan :( I am not surprised though, it's been over 1 1/2 years since she was in her stander and there have been a lot of changes with her body since then.

We are also looking for a suitable bed for Kiera, the one she has just has not held up to the use that we need it too. The zipper has been fixed a number of times over the last 3 years, and the crank to go up and down and elevate her head, keep bending and the more it gets fixed, the weaker it is, so eventually that is going to break! Kiera needs her bath chair adapted again because of the curve on her spine has increased AND her wheelchair seat needs to be looked at or a new one made... I feel like it's a loosing battle with all of her equipment and bracing!!!!

We were supposed to see her dietitian today but I cancelled it, I am tired of having appointments 'just because it's time' today's appointment would have not changed anything, so why get Kiera up so early to shower, dress, fix her hair (all of which she does not care for) and drive through rush hour traffic for 25-30 minutes, just for a check-up? I just don't see it!

This Saturday is my birthday and I love my birthday ( I don't know why, I just do!) but this birthday I will be spending it at a funeral. I will be 3 1/2 to 4 hours away from Kiera, I hope that she will be okay over the weekend.

On a more up beat note, I bought Kiera real Cheerleaders pom-pon's, they are the color of our Football team the Vikings!!! I am so bad, I want to give them to her today, but her Birthday is not until October!!!!! I think I am going to have my husband hide them from ME so I don't 'accidentally put them in my car and somehow they end up at Kiera's home'!!!!!