Tuesday, December 30, 2008

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.

Tuesday, December 23, 2008

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!

Thursday, December 18, 2008

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...

Saturday, December 13, 2008

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

Friday, December 12, 2008

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.

Thursday, December 11, 2008

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.

Tuesday, December 9, 2008

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.

Saturday, December 6, 2008

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.

Tuesday, December 2, 2008

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!