Wednesday, April 9, 2014

1-10 and Letters Too

Lamictal is the med we have dreamed of!  Anna has had only 2 seizures since beginning on it and they were short and mild.  It has taken from the end of January until today to get to the full dose but we are finally there. Anna has made more progress at school since the med change than I have seen in a very long time. She is counting without problems. She is remembering letters. She is recognizing numbers. She can enter "3-0-0" on the microwave all by herself and that is huge. One of my goals for her this year was to recognize numbers so that she could cook herself some popcorn or something like that with minimal assistance. Look at the last post at her spelling test. Now look at this:

Unbelievable!  I can't even believe it is the same kid. I cant explain how good this feels for me so I know it must be so amazing for her too.  I swear there is a genius in there just dying to come out. But of course with every positive we are usually certain there will be something not so positive to accompany it. Anna has been on antibiotics twice within the past 2 1/2 weeks. She will spike a high fever and wake up with a junky cough. She had a CXR which confirms she has been aspirating. I truly believe it is happening at night and not with eating and drinking. She had a swallow study back in January that was mostly normal and the choking she had been doing has mostly resolved. We continue to use small diameter straws with all liquids to help her. I hear her do this weird swallowing thing at night and I have been pretty sure it has to do with reflux. Years ago she was scheduled to have a fundoplication which we ended up canceling and avoiding with pyloric dilation. It seemed that the delayed gastric emptying was causing things to back up which was actually the problem. Once that was fixed things improved. Well the pyloric dilation is still in effect but now there is reflux and aspiration again. We may be looking at surgery again. I hate more than anything in the world to put her through it. It breaks my heart. But lung damage is serious and I have to look at the big picture. To say I am frustrated with the GIs office would be an understatement but that's a whole other post. Suffice it to say it would be nice to communicate directly with a doctor and not through staff who can't seem to relay a message accurately.  There will be more to come on this whole issue. For now we continue the augmentin and hope for the best. Thinking about putting her through another procedure makes me want to vomit.  Excuse me while I head to the toilet. 

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