Genetics & Seizures & Medications

So it's been a while but things happen and I get busy. Kian is growing like a weed. He's roughly 46 inches tall and is around 56 pounds. Amazing to me considering a year ago he was about 20 some pounds lighter. Anyway, Kian had a couple seizures on June 26th. The first was a grand mal around 11pm and I administered the Diastat around 11:05pm. I had to look it up to see how long it would take to start working. So about 15 minutes later I wound up calling the paramedics since it wasn't stopping. They got here and we transported him to Salem Hospital. He was actually starting to come out of it and as soon as we pulled into the driveway of the hospital he went into a second smaller seizure. Okay so we had to stay overnight because he wasn't supporting his airway which was most likely from the Diastat. They called Doernbecker in Portland in the morning and he had basically outgrown the dosage of the seizure medication he was on. Well, we upped the dosage slowly over the next week and the severe mood swings began so we titrated it back down a bit and still had severe mood swings. Now we are phasing that medication out and putting him on the Topamax twice daily. So far there hasn't been any seizure activity since but I am monitoring him closely for signs of it. The genetic testing came back and he does have a chromosome 6 deletion of 10 genes on one copy of chromosome 6. When we meet with the doctor at the end of the month I should know more of what to expect. I did however join a group on Facebook of people that have children with this particular deletion. It looks like it is pretty much down the line with the disabilities Kian has. Next order of business is to take him camping at Grandpa's since Grandpa got us a tent. I figured this would be a good start to see how he does with a tent and such before trying an actual campground. He did go camping this past weekend with his Dad and his fiancee and they said he did awesome. I just want to see how he does for myself.

Updates...

Kian is doing so well. He has been back home with me since two days before Thanksgiving 2013. Sue and Bill are AMAZING people and have become a set of surrogate grandparents to my little guy. Kian is finally forming a relationship with his Dad and his fiancee. About time for that to happen. And Kian is growing extremely fast. He's currently 44.5 inches tall and 51.5 pounds. I think he's actually a bit taller but it is hard to get him to stand still to measure him so I may have to do the old tape measure on the wall with a pencil trick. Kian spent Memorial Day weekend with his Dad and Dawnell. It was kind of funny because Minx had a fit about him being gone that long. I think she thought he got taken away again and she cried and cried and cried and would NOT leave me alone. The DHS case has been closed as of May 12, 2014. Rose Cokeley was the last worker we had and I thank GAWD we had her because she got our baby home to us when the other workers weren't doing anything on the case. Lastly we're working on hopefully buying me a mobile home in McMinnville.