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Well Yesterday was a much better day. We got down the Christmas ornaments and put up the tree. Jacob was in such a good mood he even posed for this picture with Julia. He even smiled. For now things are good. Since it is a rainy weekend here in Sunny Florida the kids have been stuck in the house. The christmas stuff has helped keep them busy for now.
Tomorrow Jacob will go over to Queenie's house (my aunt house) to do his homeschooling. Julia will go to her school and I will have a few hours to pick up around the house. After being stuck indoors the last few days things are kinda messy.
Jason and I set up our second living room now that the kids have more or less grown out of the play room they had. It's nice to have a place for Jacob to play his video games or watch a movie and he can be alone. He likes to go down there away from everyone and relax.
For now that is all the news. More tomorrow.
Ok, just so you know, I have been sobbing for the past hour. I am trying to suck it up so bare with me, I have to get it all out.
I keep wondering what the future will hold for Jacob. I know that it is not for me to know, but I can't help but wonder. Some days he seems so "normal", others not even close. It also makes me sad that he doesn't like Julia very much. Sometimes they get along, but for the most part not so much. I almost feel bad that I brought her into this world. Some days I just wish he would love her. Looking at him and how frustrated he gets it makes me cry. I just want to know how to help him cope with everyday life.
I guess the past 5 years are catching up to me, I have always know there was something, but not what. It's almost like he is to smart to be a part of life with peers or those younger than him. Don't get me wrong, I am not one of "those" mom's but he has been tested and we know from that first preliminary test he did test in the high above average range. I just want him to do little boy things, he always wants to be ahead of the game and always has. That is just the way he is.
I just wish that more people knew him like I do. I want so much for everyone to know him and all the things about him. Most of the time I am afraid to bring him out with me because I know how he is with other kids. At the same time he is so sweet to me and all of us who he loves. He really has a big heart and that is what makes me hurt the most. It's like it is so big and he wants so badly to love and relate but he can't make himself do it. I know how much he wants friends and how much love he has but he has such a hard time.
Ok enough self pity, I am done and feel better now.
We went to see Dr. Kenawy to see about the dosage of his medication and to see about the test results from almost 3 weeks ago. We decided to keep him on the same dosage it seems to be doing well for him. Only 3 of the 4 test were back and they were normal, but we expected that because they were not the most important ones. The last one was to check Kidney function and will not be back until 10-14 day from Yesterday. Let's pray it is normal also.
One other thing we talked about was the restless sleeping and sleepwalking. Jacob has ALWAYS done this. I don't know that he has ever really slept well. I talked to the doc about it and told him how bad it had gotten. Jacob gets up sometimes and tries to leave the house. He wants to have him checked out by a neurologist because a lot of times this is a symptom of a seizure disorder. REALLY MORE DOCTORS!? I am beginning to think this is some kind of crazy conspiracy between them all to make money from us! $25 each time we go to see Dr. Kenawy, $40 a week to Dr. Decker and now $40 when we go to the neurologist. Then Then there will be a CAT scan and an EEG. HELLO! CO-PAY! I know it is all very important and we need to do it, I am just so frustrated. I know God is there and he is leading us through this and for good reason. I just want to know the reason! I know things could be worse, believe me I know. I just need to pray and love my son and do whatever it takes to help him cope.
Until tomorrow!
So today we began the I.Q test. It was supposed to be done in one session but Jacob had to take a break every 15 minutes. He got very frustrated and wanted to stop. Dr. Decker had to trick him into continuing. When it was evident that we would have to come back later Dr. Decker said that the type of test was below Jacob and next week when we come back he will start with a higher level. He is also going to review the evaluations I did and and decide whether or not to further evaluate him for an autism spectrum disorder. So I guess it went as well as I suspected.
I kind of feel better now because I am not crazy and I don't feel like such a "bad mom". He isn't a "normal boy" that I can't handle. There is something there, something wrong! I am relieved in a way, but also sad because at this point I don't know what to do or how to help him. That will be my next step and I know that things will be better.
I don't think anyone knew how I was feeling because no one is around him as much as I have been. They just see an active boy. I see all the little things. I have always know there was something, but never what it was. I am so happy to be getting him in the right direction.
Until tomorrow when we go to see Dr. Kenawy. He hopes to have the test results in to go over them. Other than that we will discuss the dosage of his medication and the possibility of prescribing a sleep medication that will help with the sleep walking.
Tomorrow is Jacob's second appointment with Dr. Decker. I am looking forward to it because he will begin the I.Q test and start the process of helping us. I finally finished all of the evaluation forms he gave us last week and I am anxious to see what he says.
I am also nervous about this next appointment. The last time we were here Dr. Decker brought out the beast in Jacob. He had a good reason to do it though. Allow me to explain. He asked Jacob to sit at his desk wile we talked about Jacob. He gave him a book with various drawings in them and a blank page next to each drawing. The difficulty of each drawing increased on each page ranging from a drawing that a 2-3 year old should be able to duplicate all the way up to what an adult should be able to duplicate. He never told Jacob when to stop, he simply instructed Jacob to draw what was on each page. Jacob got about half way through and I saw that he was beginning to get frustrated and told Dr. Decker he was almost at his breaking point. He told me to let him be and we continued talking. Jacob became very angry and started to throw the book and his pencil pushing the chair and hitting his head on the desk. Dr. Decker told him he may stop and there was no need to be angry. Then he gave him a prize for doing so well at what he had completed. I was confused because The way I looked at it was he was almost praising him for the fit, but as he talked Jacob down he brought it back to what a good job he had done before the fit. I was quite impressed with how well he handled the situation and calmed him down.
So now I am nervous about an I.Q test because of the last fit. But after seeing how well Dr. Decker handled him I really shouldn't be. He is a professional. We will need God to be in that room tomorrow and I know he will be there with us.
Now with that said we have another appointment Tuesday with Dr. Kenawy Jacob's pediatrician. We are going to talk about how the Focalin has been doing and I hope the test results are in yet. I also plan on asking about getting something for him for sleep. He has no trouble getting to sleep. He is just so restless and the nightmares are terrible! He rarely ever wakes up but he sleepwalks and sees to be in the middle of the nightmare as he is sitting in bed or walking around the house. I know that this is not a side effect of the Focalin because this is just one of many of Jacob's "quirks". He has had nightmares I suspect from about 6 months of age until present. Just another thing to add to the ever growing list.
On a good note he has been going to church with me for the past 4 weeks. He has been doing very well. This is a change from before. I used to leave him home because he became so anxious he dreaded going. Last night he asked if he could go with me today. One small step in the right direction.
Until Tomorrow friends.
So I have worked at BBW for over a year. I recently got a promotion and became a member of management. It was a fun place to work and the employee discount and pay was pretty good. Most of the people I worked with were fun to be with. with the exception of one. Nicholas, the co-manager has been a pain to work with from the beginning. No one wanted to work with him and he had complaints coming out of his ears from both customers and associates. Needless to say he and I never got along, but I tried to keep it between he and I behind closed doors. I found out yesterday that he just got his final write up.
I have never been written up or had even one verbal warning or complaint, except by Nicholas, apparently. I went into work yesterday just as Nicholas, my Manager and the District Manager were coming out of the back room. They had a meeting. Now it was my turn. They said that it was apparent that Nicholas and I did not get along and I was not happy there (I wasn't) and I had to resign effective the next day or they were going to fire me making me not rehire-able. Therefore a whole year of job experience down the drain. Not to mention all of the training I got when I was promoted.
I am angry and confused. I still can't figure it out. He has been walking on a thin line for a very long time. In fact When I was promoted I was instructed to keep him in order because he was close to loosing his job then. I am over it now and I really don't care but why was I the one forced to quit? Why not him? I have a`perfect record and wonderful reviews.
Whatever, I am done venting now. Thanks for listening.
A few weeks ago Jacob had what seemed to be a bladder infection. He called me from the bathroom crying saying that he was peeing blood. My first thought when I saw it was it must be the medication that was dying his urine, but then he told me it hurt a lot when he peed. So I looked it up and the medicine that he was on did not change the color of urine. So I called the doctor and they asked to see him right away.
A UA was done and he was put on antibiotics and the urine was sent to the lab because it tested positive for blood and protein. They wanted to know what bacteria was causing the infection so they could treat it more effectively.
They were concerned mostly because boys don't often get bladder infections.
He looked at his chart and there were some red flags. Jason's family has a rare genetic decease called Fabry's. hey wanted to know more about what was going on with him. They ordered blood work and another more advanced UA. We are still waiting to see what those test say. I will be sure to let you know how that goes. I hope it will come back soon.
Jacob has always been a quirky kid. I have always known this. I can list all of the things he does but that would take forever. So, let's just start with the most recent events. Last month me was asked to leave school. He was in K-4 at Covenant Christian. He was there last year also for K-3 and for the most part did very well. When they asked him to leave his teacher suggested we have him screened by the school board to see if there were ant developmental delays. Well there were none, but they did however, determine that he was "emotionally handicapped and needed further screening". This would have taken an eternity to get done through the school board so we took things into our own hands.
I started by calling hid doctor and telling him what had happened in school. I explained to him that Jacob had been asked to leave school because he was hitting himself and becoming very frustrated. This was no new new to the doctor. We have been going through this with him almost all of Jacob's life. We tried to change his diet and it just wasn't working. His doctor said it would be a good idea to start him on ADHD medication. He prescribed Focalin Xr and he has been on it for two months. So far it has worked wonders. Jacob is a whole new child!
His doctor asked that he be seen by a psychiatrist so he could be supervised by them while on the Focalin.
We made an appointment with Dr. Decker and we saw him for the first time yesterday. Jacob really liked him and so do I. He wants to rule out autism first because he seems to have a few traits of Asburger's Syndrome. He sent me home with a stack of evaluation forms for me and my aunt (she is homeschooling him) to fill out. We will see him again next week to have an I.Q test and further evaluation. We seem to be on the right track so we will see how things go.
That's where we are now with that. more to come as we discover more.
Let me begin by telling you a little about me and my family. We are the Stevens' I am Heather, my Husband Jason and two children Jacob 5 and Julia soon to be 3. We live in Sunny Florida and have all our lives. Jason and I have been together since freshmen year of high school. That makes 13 years. We have been married 9 of those years.
I have a great extended family who all help us in the rearing of our children. My mother lives in our mother-in-law apartment at our house. We love that, it's like having a third parent. My aunt and uncle won't have kids do the have taken to ours very nicely. My grandma is also very involved in their lives. Having them all around is great.
Jason is a great dad, husband, friend, all around good guy. I enjoy him more with each day that passes. Seeing him interact with our kids makes me smile. For the most part he is just a big softie.
Jacob to say the least is a quirky little boy and always has been. For the most part this blog will be about him and what we are going through with him. He is sweet , funny, active, and most of all just plain quirky.
Julia is your typical little girl. She loves to be dressed in all pink and ruffles and bows. She loves babies and tea parties. She is so sweet and kind. She is shy but it doesn't take long for her to warm up.
Me, well I am wife, mother, daughter, friend and always on the go. My family comes first and I enjoy every day that I have with them.
Well that's my intro to us all!
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