Tuesday, July 30, 2013

11 hours....A dash of hope.... And random flying objects

After many months of trying to get Haley's behavior under control and med switches we finally decided to make the journey to Cincinnati Children's Hospital to see Dr. Erickson. I definitely have to say that he is one amazing doctor and it is one amazing hospital.
Quick background, Haley has been diagnosed since she was 8 months old. Been on anti-psychotics since age 2 1/2 for aggression. We have tried countless other meds and she has been hospitalized twice for psych stays. Most recent a year and a half or so ago. While I have nothing against the psych doctors she saw here they were not "competent" (yes I used that word and yes I mean it) to help her. After recommending what I considered an outrageous med change I asked our Fragile X doc in Cleveland to get me a name of another psychiatrist for a second opinion. (I love our Fragile X doc, just to clarify she does not prescribe for Haley, after her admission to the hospital she did not feel comfortable doing so with the different meds they had put her on) After contacting Dr. Erickson and getting his opinion I convinced her psychiatrist to change her meds on a trial basis to see if we could get her stable enough to get her down to Cincinnati. (you should have seen the doctors face when I took her in after the med change, shock and awe, she was a completely different kid)
For the first 4 1/2 hrs......
She was pretty good. Thankfully at 4am its dark and she likes the dark. I was hoping she would sleep but no, of course not. We couldn't get that lucky.
When we got there I was nervous because she is very unpredictable, my boys I can read pretty well, but she is very deceiving. To my surprise though she loved the waiting room.
just plain silly

pretend annoyed

 pretend mad face
During the appt however did not go so well. She did not cooperate, nor did I expect her to. (would you after being up since 3am cuz I wouldn't) He did get to check her muscle tone but that was it Donnie had to take her out so we could actually talk. They did have the child life dept bring in what I can only describe as the Lamborghini of sensory machines. (literally the size of a refrigerator with a water tube in the middle that had bubbles and balls going with lights and fiber optics coming out and a light projector on the top, If I could have fit it in my van I would have) BTW child life is awesome. I have never had the experience of working with them before but it was great! 
               We discussed several options for medication and came up with a pretty sound plan of treatment I think (with Haley you never know since she never responds like I think she will). Then he asked if I had any other questions. Well number one on my list puberty. (I don't want to see her with PMS) Thankfully there are plenty of options. Number two and my number one concern, what are the chances of her being institutionalized? Why am I asking now? Well, good question, she is only getting bigger and stronger and I am not. If her chances are high then I need to start researching now because I like to be overly prepared for every possible situation if I can. (I obviously do not want this for her but I am a realistic person) Thankfully he is optimistic and said that he honestly believes he can get her behaviors under control and that he doesn't see that happening with her. ( I on the other hand am cautiously optimistic) Overall a productive visit. We go back in 6 months with follow-ups in Cleveland.
The ride home however was not good. She made it halfway before random flying objects began coming forward towards our heads. Anything and everything she could find. She even tried to rip the seat belts out. (which I have to say was kind of interesting to watch) We had to find a spot to pull off and "extract" her from the car and move her to the back and clear everything we could. (picture us on the side of the highway doing this it had to have looked pretty entertaining) The screaming is the one thing we couldn't stop which I really need to find a remedy for before we go again for my sake. If there was any plus side to the ride home I got to see this:
Mansfield Reformatory, the prison from the movie the Shawshank Redemption. Disclaimer: It was on the way and we did not get out of the car we just drove past so please don't think put Haley thru any more stress (I just really wanted to see it).

Overall Haley did better than I thought she would, Donnie said she did way worse than he thought she would. I just told him that was because he doesn't go to enough doctors appts. Hopefully next time will be even better and I might just have to install one of those cage things that police men have in their cruisers to block anything being thrown at me just in case.

Friday, July 26, 2013

Meet Jen!

Yep that's me! I think I am 2 in that picture maybe. I know I am adorable. I have been told by one of my best friends Sherrie (yeah you just got called out) that I still look the same as I do in this picture. I guess I am still adorable. I figured that I have introduced all of my children to you so I might as well do the same with me, at least more than what you get on the little Facebook feed thing. 

My childhood wasn't great, it wasn't bad, wasn't great.  I remember getting away with a lot of stuff my parents didn't know about because they fought a lot. (not bad stuff before your mind starts wandering too far, kid stuff, riding your bike too far from home, going to one friends house when your suppose to be at another, running off to buy candy) Now that part was fun! Halloween was and still is my favorite Holiday. Don't ask me why. I think it is because I get to be someone, anyone, else for just one day. I remember all the cool houses we used to go to (when Trick or Treat was at night) it used to just amaze me, some had smoke and lights and music and it just stuck with me. I will say there was one bad spot, it involved some neighborhood boys, I was younger than 9 so it is a little fuzzy but it is what it is. I do not think any further detail is needed.

I was enrolled in a Catholic School from the time I was in preschool on. I was a smart kid. I even managed a 4.2 once in High School. (not to shabby I would say) I had my first boyfriend when I was 16. I got pregnant when I was 17. (insert any catholic school girl joke here) Say what you want about teen moms. I totally rocked that! (evidence: have you met my son Nathan) I married my first husband not long after I got pregnant. We had Serenity 3 years later, that's her in the picture below and she was by far the easiest baby ever!!!!!! After almost 5 yrs of marriage we split. As to why, well.. one we were too young, two I am not an easy person to live with (disclaimer: this statement is based on third party statements not on my own personal opinion because I think I am easy to live with as long as you do it my way, what woman doesn't), three he likes to hit women, put that in any combination and you are asking for trouble.
I met Donnie (aka my husband) in a "grey" area of my life. (which is a nice way of saying depending on how you want to look at my situation at the time you could spin it however you choose, in my mind after 4 years of having the crap kicked out of me my marriage was over long before then) We then had our two children together Haley and Tyler. We have been together for over 9 years now, and we have been through a lot. We don't get a lot of alone time together, but when we do get it we make it count. Thankfully we both have a good sense of humor or I think we would have both gone insane by now (my sanity however has been questioned). We have argued and fought and laughed and cried and been to hell and back and I don't think I could have done it with any other person. He is my soul mate.
If there is anything that I have learned about myself in writing this it is that I am actually a pretty cool person. (not to sound conceited or anything) Nobody has an easy life, mine sure isn't. Most people get judged on theirs, I know I do on a fairly frequent basis and usually by people I wouldn't expect to be (and shouldn't be). All I can say for myself is, no one has walked my path, no one has experienced what I have. I think that all things considered I am doing a pretty good job with what I have (except migraines, I hate migraines, if someone could just magically fix that problem that would be awesome). So I guess with all of that said I will now do what my friend Sherrie asked me to do, which is put more cute pictures of me on here.

Friday, July 5, 2013

Meet Serenity

This is Serenity...
Serenity is our one and only "typically" developing child. She just turned 10 a couple months ago. She has by far one of the kindest hearts I have ever seen. (granted there are some days but for the most part she amazes me every day) She is very intelligent, compassionate, accepting, hardworking, creative, loving, dramatic, funny and determined. She is a cheerleader and socialite. She is an artist and writer. In my mind she will change the world some day. She loves her brothers and sisters very much and she does her very best to protect them. One story that comes to mind is something that happened on her bus. An older boy was talking next to her and he used the "r" word. She immediately got upset and very loudly explained to him that her siblings were that way and he shouldn't talk that way, they weren't able to help it and he shouldn't ever use that word again. When she has her friends over and they ask "whats wrong" with her siblings she says they have FXS that is just the way they are, they just act different than you and she moves on. She has seen a lot and had to deal with a lot in her 10 short years but she has handled it all as best as she knows how. There have been some tears and she gets angry because our life isn't like everyone elses but we talk through it and we move on. Serenity is one amazing girl who I am sure will be one amazing woman one day!