2012 in review

Just wanted to summarize 2012 and especially in regards to Christian. I know many of you keep up with us and his progress thru the blog.

In January he got his Baclofen Pump. This pump is placed under the skin on his lower torso. A catheter delivers medicine in to his spinal fluid. This medicine helps "loosen" his muscles. Instead of his legs being rigid and hard to move they are loose due to the continual release of medicine. I'm so glad that we did this. It has been so great for him in many ways...easier to dress and change him, less muscle spasms, helped him gain weight because muscles aren't always contracted, and improved walking. However at first he could not stand because he was used to using his tone. So...

In february we went to Kenny Rogers Child Center in Sikeston for our 3 week intensive. We purposefully planned this after the pump..knowing he would need intense work to get back to standing and walking. You can look back in the blog to read about that visit. Overall he got back to where he needed to be physically by doing this intense therapy.

March and April was spent continuing to work on strengthening his legs and upping the dosage of medicine released. However we did find out that he had large kidney stones (too large to pass) which are a side effect of the ketogenic diet. On that note....the diet is controlling his seizures wonderfully. He has 1-4 a month and they are small..lasting about 10 secs to 1 minute.

May, June, July
The summer was spent traveling to St Louis Children's Hospital to treat his stones. Basically we were going every 2 weeks. They were treating both kidneys. On our last treatment he did not react well. The next day he had a one and half hour long seizure that landed us in the icu 2 days and peds floor 4 days. A lingering temp was the mystery...
We did enjoy swimming and Silver Dollar City as much as possible in between trips to St. Louis

August
Baby Sydney Nicole was born 8-10-12. This was the highlight of our year!!! She was our little baby of the family at 7,14...My mom stayed on and off for 5 weeks due to the fact i couldn't lift Christian. We are so grateful. That was hard for me to not be able to work with Christian.

September-December
Christian started Kindergarten..hard to believe. His teachers are fabulous. He attends 3 hours a day. School can be tiring for him but he loves it. Always smiling when we mention it. We continued to up his dosage of baclofen and he is doing great with his pump. His transitional walking (walk to and from chairs or stander..10-15 steps) is improving. We are trying to get him to walk more so that we are not carrying him.
He has mastered signing for "more" and "drink". We are working on signing "yes" and "all done". He also has 2 buttons that say Hi and Bye and he has almost mastered that skill.
Christian continues to go to physical, occupational, and speech therapy outside of school and in school. We are waiting to be scheduled for our next intensive in Sikeston.

Overall 2012 was great... some medical highs and lows..and of course our newest addition Sydney. Can't wait to see what 2013 holds.