New updates

We had a wonderful Christmas and I hope you all did as well. We are all looking forward to a great new year and all the things that come with it. I am so thankful for all of my family and friends.
I took Jacob to the doctor today to get a new prescription. The 10mg of Focalin in the morning was too much. He became a lump and didn't want to do anything until about 12:00pm then it was as if he had never taken anything even though it was time release it didn't re-release in the afternoon. He is now taking 5mg of time release in the morning and 2.5mg in the afternoon if he needs it. I was happy when we first started it and the 5mg dose but it didn't last very long. I think this will be a happy medium.
As for seeing a neurologist it's going to be a few months for that. Who new there was such a long waiting list?
So for now that is pretty much it.
Untill tomorrow, God bless.

It's Almost Here!

I love this time of year! I am so excited to see all of my family and share such memorable moments with them. Since my aunt is such a big part of our lives we will be going over to her house to spend the night Christmas Eve. She and her Husband don't have children so my kids are just as much theirs as they are mine.
The kids are there now while I do some last minute cleaning and making room for new stuff. I plan on going over to her house first thing in the morning and baking all day with the kids. Even though we don't really do the whole Santa thing we have never denied our kids the magic of believing. The have asked if we can bake cookies for Santa and leave them by the fireplace for him to eat. So of course we will make fun cookies. They have been told the story of where Santa comes from and why he did the things he did. We have told him that the spirit of Santa lives in your heart and we should give to others as he did out of the goodness of your heart. As always before bed we will read to them the Nativity Story just so that they never forget the true reason for the season.
Christmas afternoon we all will be going over to my cousin's house for a pot luck lunch and gift exchange. I can hardly wait to see the rest of the family! After that Jason the kids and I will be driving to Fountain to see his side of the family and have dinner and more gifts! Aunt Linda will be coming home tomorrow so the kids are very excited to see her again! She has been in Tennessee with her daughters and grandchildren foe almost two weeks! We are all missing having her around.
Merry Christmas Everyone!

I am back to being concerned; again.

The last time we went to see doctor Kenawy we talked about Jacob sleepwalking and he wanted him to see a neurologist. I don't have and appointment yet because the doctor is out of town. But as soon as he gets back they will call us with an appointment. I think I may have to call Children's Medical Services and see if we can get into see one of them.
I am concerned not just because of the sleepwalking but also because Jacob has been complaining about being dizzy and says his head hurts. Add this to the list, it seems to be never ending. I know it is not because of the Focalin because this has been an issue before that. I have no clue what it may be.
We have been to a neurologist before when Jacob was one. He had a seizure and they are assuming it was caused by a fever he had the week before with an ear infection. They tried to make him have a seizure under sedation but were unsuccessful, so that lead them to believe that he did not have a seizure disorder. They also did a CAT scan and an EEG. Both came back with normal results and we went on with our lives.
Now Jacob is older and has been complaining of these headaches and dizziness. I feel so helpless and frustrated. I just don't know what to do or where to turn. I am at the end of my rope.
I know God is great and he will take care of our needs if we are faithful. So now I just pray and wait. I know He has a plan for us and it will be good. Things could be worse and I just have to stay in the moment, do not look ahead, but up to Him for where I should go from here.
Until I know more...

We have an answer!

Ok ready for it? Jacob was officially diagnosed with asperger's syndrome. I included a link to a topic overview for those who are no familiar with asperger's. We got his I.Q test results back today and it showed an average of al the different test was a score of 109. The average I.Q is around 95-109. Dr. Decker didn't like that number because he scored so high on several of the sections of the test he felt like Jacob's frustration held him back. He wants to do it again in a year. On most of the test he scored in the 7+ age range. The sections that he scored average on were the ones he became very frustrated.
So now what do we do? The doc has a support group for people with asperger's every third Saturday for kids in one room together and the parents in another. He says that it is really amazing how the kids interact with each other. The parents all sit and share information like what's working and not. I am pretty excited. The first one will be next week.
So we were kind of undecided about where to sent Jacob to school. When I talked to the doc today he told me that Lucille Moore has an asperger's program. Jacob can go to that school and be with like minded people and learn the way he needs to learn. I will be calling them on Monday! I can't even tell you how happy this makes me! Finally we have an answer, a way to help him and a solution to our school problem.
What an amazing day! God is great!
http://www.webmd.com/brain/autism/tc/aspergers-syndrome-topic-overview

Tomorrow is a full day!

Tomorrow is the day we have been waiting for! We go to see Dr. Decker tomorrow at 2 pm to get the results of his I.Q test. Also get his opinion about Asperger's and the Sensory Integration Disorder. Let me tell you I can hardly wait.
Meanwhile Julia will be going with my mom to a friend of the family's child's 1st birthday party. Wow that was a mouthful. Needles to say she is super excited. She loves a good party. There are almost always balloons at parties and that is her favorite part.
Jacob will hopefully be going to Pump It Up for Christmas Craft Day, an event my church holds every year for the kids to make stuff to bring home for mom and dad. We tried it last year but we were unsuccessful. Jacob panicked! Is was a large crowd and at that time I didn't take him to church much because it just made him anxious. So it was better not to bring him at that time. Now that he has been going more frequently he knows a few more people and I hope that he will feel like staying. I plan on hanging out with him just to be sure he is comfortable. If all goes as planned he will be there from 10am until 2pm.
I think his medication is not working as well as it was so we may have to change it. We will just have to see how it goes tomorrow. As of right now he wants to go.
I will let you all know what happens tomorrow night. Until then, Good night and God bless.

WOW! I can't belive it!

I Just found this and it is Jacob to a T! I can't wait to show it to Dr. Decker. He does every single thing on this list! Unbelievable!

What is sensory integration dysfunction?

Children with sensory integration dysfunction have difficulty processing information from the senses (touch, movement, smell, taste, vision, and hearing) and responding appropriately to that information. These children typically have one or more senses that either over- or underreact to stimulation. Sensory integration dysfunction can cause problems with a child's development and behavior.

Who has sensory integration dysfunction?

Children with autism and other developmental disabilities often have sensory integration dysfunction. But sensory integration dysfunction can also be associated with premature birth, brain injury, learning disorders, and other conditions.

What causes sensory integration dysfunction?

The exact cause of sensory integration dysfunction is not known. It is commonly seen in people with autism, Asperger's disorder, and other developmental disabilities. Most research suggests that people with autism have irregular brain function. More study is needed to determine the cause of these irregularities, but current research indicates they may be inherited.

What are the symptoms?

Children with sensory integration dysfunction cannot properly process sensory stimulation from the outside world. Your child may:

• Either be in constant motion or fatigue easily or go back and forth between the two.
• Withdraw when touched.
• Refuse to eat certain foods because of how the foods feel when chewed.
• Be oversensitive to odors.
• Be hypersensitive to certain fabrics and only wear clothes that are soft or that they find pleasing.
• Dislike getting his or her hands dirty.
• Be uncomfortable with some movements, such as swinging, sliding, or going down ramps or other inclines. Your young child may have trouble learning to climb, go down stairs, or ride an escalator.
• Have difficulty calming himself or herself after exercise or after becoming upset.
• Jump, swing, and spin excessively.
• Appear clumsy, trip easily, or have poor balance.
• Have odd posture.
• Have difficulty handling small objects such as buttons or snaps.
• Be overly sensitive to sound. Vacuum cleaners, lawn mowers, hair dryers, leaf blowers, or sirens may be upsetting.
• Lack creativity and variety in play. For instance, your child may play with the same toys in the same manner over and over or prefer only to watch TV or videos.

How is sensory integration dysfunction diagnosed?

A health professional, often an occupational or physical therapist, will evaluate your child by observing his or her responses to sensory stimulation, posture, balance, coordination, and eye movements. While many children have a few of the symptoms described above, your health professional will look for a pattern of behavior when diagnosing sensory integration dysfunction.

How is it treated?

Sensory integration therapy, usually conducted by an occupational or physical therapist, is often recommended for children with sensory integration dysfunction. It focuses on activities that challenge the child with sensory input. The therapist then helps the child respond appropriately to this sensory stimulus.

Therapy might include applying deep touch pressure to a child's skin with the goal of allowing him or her to become more used to and process being touched. Also, play such as tug-of-war or with heavy objects, such as a medicine ball, can help increase a child's awareness of her or his own body in space and how it relates to other people.

Although it has not been widely studied, many therapists have found that sensory integration therapy improves problem behaviors.

The last few days

So the last few days have been pretty fantastic! Jacob went to the church yard sale with me on Saturday and he had a good time. He play with some of my friends little girls, granted they are older 8 and 9 I think, so he was happy. He always likes to be with older kids. He went to my aunt's house after the yard sale and spent the night, so we ended up skipping the Christmas parade. We will go to the one on the beach and make up for it. On Sunday we went to Pump It Up for one of my friends kid's party and there were a few older kids so he had a great time. I think he would have had a good time regardless but having a few kids there he could play with put the icing on the cake. Julia had a great time too, she ran around and went from one bounce house to another the whole time.
Yesterday Jacob went to Queenie's (my aunt) for school. Jason forgot to take his`medicine with him so Jacob had to make it through the whole day without it. He did very well surprisingly. He made a battery out of a lemon and tested out how much static electricity he could generate on the trampoline all-in-all it was a good day.
Julia also went to school and started making her t-shirt for the Christmas show at her school and couldn't wait to show me what she had done. It is going to be really cute when it is done. So far it is only a footprint. She always has a good time at school.
Today was a pretty good day for Jacob he didn't want to go to the playground with Julia and I. He didn't want to go to Queenie's either. He just wanted to stay home and build and relax on the couch. Oh we all have those days.
Tomorrow Jacob will go to Queenie's and Julia to school then Queenie will pick her up and they will both spend the night over there. I will be taking the day off and seeing some friends and doing nothing tomorrow night. The house is clean thanks in part to a new gadget and Aunt Linda!
The new gadget I got is the Hoover Floormate and it is AMAZING! I hava all hard wood floors and I hate cleaning them because I feel like I am moping with dirty water. It takes me days to get them al clean and I have a small house! If you have wood or tile floors GET ONE!
Until tommorrow. Good night and God bless.

The results are in!

Friday Dr. Kenawy's office called with the results of the glyco amino glucose test is back. Although you have to have a genetic test done to see if you have Fabry's other test can be done to see if other levels are raised that may be an indication of having Fabry's. Jacobs test came back and did not show sign's of fabry's but the Levels came back elevated so for now we have to go back every few months and have blood drawn and a UA every month just to make sure his kidneys are working ok. So that is all of the info I have for now. We are getting ready to go to the Christmas Parade. Until tomorrow.

Round 2 I.Q test

So we had our appointment with Dr. Decker today to finish the I.Q test we started last week. The one we started last week was below Jacob and he combined two test on a higher grade level to keep Jacob interested. It worked and Jacob did very well.
We will go back one week from Saturday to get the results from the test and see what he thinks about the Asperger's Syndrome evaluation that we had done previously. At this point I don't care what he is labeled with I just need to know how to help Jacob. For the Most part he is just like any other 5 year old boy, He just has trouble in certain situations.
Other than that it has been a really good day. He has been playing with Julia and of course his video games (he only played for about 20 minutes so very little vegging out today). Now he is just relaxing on the couch looking at a schoolbook and trying to draw some pictures, which is also a little unusual for him. Julia is resting too so all in all it is a pretty restful relaxed day.
Now it is time to finish laundry and and a few other little things around the house.
Thanks for all the prayers!

Better days...

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.

So I am a little scared and sad

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.

Ugh, more doctors!?

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!

Jacob's appointment today

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.

Just beginning the process

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.

Yes, I quit my job.

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.

Jacob's other health issues

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.

All about Jacob

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.

An introduction to us...

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!