Update

Kian is now 9 and a half years old and growing like a weed. He's still developmentally delayed which with the chromosome micro-deletion is not really a surprise. He's one of the happiest kids I know. I love him dearly. He's my sidekick and majority of the time you won't see one of us without the other. He does okay shopping for very very short periods of time. I usually try to leave him home because I never know if he's just going to have a full blown meltdown or not. That is what makes the SPD (Sensory Processing Disorder) so tough, you never really know if you are facing a meltdown or not when you go into stores and such. And it really is like a computer crashing for these little guys. We have been lucky that it has been at least a year since his last Grand Mal seizure. He has the Petite Mal seizures frequently though and often in clusters. In talking with the neurologists at Doernbecher, I have found out that the Petite Mal seizures are not the ones that are dangerous. They won't cause things like brain damage and such. Kian is 4'4" tall and weighs about 96 pounds. He is growing by leaps and bounds and I fully expect him to outgrow me height wise in a year or two. He loves school and is in about the best school district he can be in for special needs kiddos. Now if we can keep him well. The bad thing is that kids like Kian usually are more susceptible to things. His immune system seems to really suck. He had his tonsils and adenoids removed March 8th of this year which has helped immensely. He still does snore some and get stuffed up but not nearly as bad as it was prior to the surgery. All allergy testing came up negative which we still suspect he does have allergies.

Just A Little Update

Okay....well so far the Topamax with Kian seems to be doing it's job. Kian is 45 inches tall and now weighs 61.4 pounds. He's growing at a VERY rapid rate. The genetics came back for his Dad and I and they showed that I am normal but his Dad evidently has the same exact chromosomal abnormality that Kian does. Chromosome 6q16.1 micro-deletion. Just one copy of chromosome 6 and just 10 genes are missing from that small section. So it looks like some more testing will have to be done on his Dad's side.

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.

Updates All Around....

So this is an update about several things. First, Kian is still not back home in my care. It should be soon since I am doing everything that DHS wants. We are currently on our third caseworker and so far this one seems like the most straight forward and best one yet. Kian had the appointment with the CDRC on Friday. It made for a VERY long day for the little guy. They do believe he is possibly ADHD but they also said they think he is mentally retarded. No one that actually knows Kian agrees with that. Developmentally delayed yes....mentally retarded no. Kian's too smart and is starting to learn more rapidly. It is very hard to be able to get a firm diagnoses off one visit. Kian has always been kind of non-talkative with new people. So hopefully we can get a better idea after a few visits. He currently weighs 36 pounds 9 ounces and is 41 and a half inches tall. So that is pretty much what is currently going on. Now I am able to have visitations done here at the apartment. The cats aren't too sure about him yet since he has gotten bigger and did smell like dog which sent his cat Minx into a tizzy.....LOL. Other than that he's doing great!!!

DHS, Polk County & Drama....

Okay, so I have to deal with DHS for the moment. They took Kian on May 15th. All over a messy house. I WILL be getting him back and then I WILL be moving back to McMinnville where my family and support system is. Polk County and their corrupt politics can go to fucking hell. Kian is doing well as far as I have seen. He wants to come home. It's hard not having him here and not being able to see him every day. I have a wonderful attorney and hopefully this will be done and wrapped up within the next month. Please keep us in your thoughts and prayers. This has been hard all the way around. And they originally came to "talk" to me about Daniel and the founded for sex abuse. Supposedly anyway. The police report and everything is nothing but falsifications and accusations of extreme proportions and is completely untrue. Please don't let DHS into your home. That was my first mistake. They are NOT law enforcement. They will take ANYTHING you say and turn it around to use against you even if their statements aren't even remotely correct. Do NOT talk to them!!! And if you are brought under investigation for anything....hire yourself a PRIVATE attorney. The court appointed attorney works for them!!! Don't let yourself fall victim to their corruption. And most importantly get a power of attorney in place for your children so they can NOT remove them from the home and have to turn them over to your family instead of foster care!!! I am trying to let people know how to avoid this crap. And please if you don't listen to me then look it up online. Google has SOOOOOO many cases of situations like mine and others where DHS has overstepped their legal bounds and have torn families apart. One thing is they WILL NOT keep my son from me. And they have screwed up on my case that it's already going in my favor. But make sure if you face ANYTHING like this you find a way to hire a private attorney. That will be your saving grace. One you pay for is one who will fight FOR you not against you!!!

Updates....

Well, Kian is now 5 years old. No seizures since the February 15th occurrence. He had a check-up with his Dr. on the 11th which was Thursday. He weighs 36.4 pounds and is 40 and a half inches tall. So far the only thing I have noticed with the Keppra for the seizures is that it makes him more aggressive and angry. He gets really pissed off at times on it. And that I am told is one of the side effects. He has started the head butting and stuff again more since being on it. I am still working on getting the insurance changed over and may just need to go for an open-ended referral so we can actually get him to neurology. Anyway, the other is DHS is back. This time they have to talk to me about Daniel. Apparently they did not do a "threat to harm assessment" when he was arrested for sex abuse on his step-sisters or half-sisters about 15 years ago. Why they need to go through our place is beyond me since Daniel hasn't seen Kian since August 22nd of 2012 and before that it was February. He never wished him a Merry Christmas or a Happy Birthday or anything and he hasn't paid ANY child support since November 2012. BUT....here's the kicker he got engaged to the latest girlfriend. So, the DHS worker that was here advised me to work on having visitation and/or his rights terminated. Personally I would rather have his rights terminated so he can't keep popping in randomly and stirring Kian up. Kian actually doesn't even know him now anyway. So anyway, I have an appointment with the caseworker on the 16th in a few days. I hope that this can just be closed down and done with because I really am tired of dealing with them.