Monday, December 20, 2010

O! Christmas Tree

Benji's 2010 Christmas Tree
Benji is finally satisfied with his Christmas tree this year. He decorated with his favorite 'Cars' ornaments, 'Toothless' from How To Train a Dragon, 'Ironhide' from the Transformers G1 series... And a snowflake beanie baby along with a few plain ornaments and snowflake garland.

In order to encourage creativity we let the kids decorate the tree in their room. (Benji happens to just have his own) It allows them to have an active part in Christmas with the decorating along with learning why we celebrate Christmas.

Benji's favorite part is when the lights blink on and off when the lights in the room are off. It entrances him.

Merry Christmas!

Friday, December 17, 2010

Deck the Halls and Party at the School House

Benji got his wish today, they went back to school. It was almost silly with it being a half day and all, but it was Party day before Christmas Break.

Benji and his Best Friend at the Christmas party
It was a quaint little non-eventful party. (Which I suppose is the best kind when you have a room full of 5 and 6 year olds.) There was food, cookies, sausage balls, more cookies, red jello, grapes, and pigs in a blanket. There was red koolaid, chocolate milk, and orange juice. (I was so very glad we brought the grapes and some of Benji's snack juices.)

After the eating was present time. For the gift exchange the kids were asked to bring in a book. Benji brought in Super Friends: Flying High (DC Super Friends) and also Brain Freeze! (DC Super Friends). They are Step in To Reading Books that encourage children to read. Benji loves them because he loves super heroes. When they exchanged presents, Benji got the book Let It Snow which is a very cute and colorful book about a snow day. Benji's teacher gave him the book Penguins, Penguins, Everywhere!

After the gift exchange there was a short movie Raggedy Ann & Andy Great Santa Caper. It was cute and even held the kids attention for a little while. But then it was time to go.

And go we did. There were a few things that happened and where said that I am mulling over right now. That will be another post some other day. :)

Thursday, December 16, 2010


Changing the date on the calendar
In hopes to calm sweet precious Benji down with the excitement of Christmas coming we picked up a numbered advent calendar. It was a minimal investment of $2 or $3 and has calmed the excitement down so that we can handle it. Now instead of waking up every morning and asking if today is Christmas, Benji runs to his calendar to check and then changes the date.

We are so glad that his "Countdown to Jesus' Birthday" calendar is doing a magnificent job at letting him know how long to the date and he can visually see the date coming closer. We only wish we got it sooner. :)

Wednesday, December 15, 2010

Tuesday, December 14, 2010

Snow is.... yucky!

A brief moment that the snow was okay
So, here in middle Tennessee we got a nice bit of snow. In our yard it measured just a touch over 5 inches. For us, that is a lot of snow.

For Benji, he normally like the 2-3 inches we get with the temperatures right around freezing. This snow is completely different for him. We haven't been over 26 for 3 days. Our lows have been in the single digits. (In fact this morning it was 4') He went outside on Sunday, when the picture was taken, but once he got cold he was done with it.

Between the snow being wet and cold, and not going to school this week has been hard for Benji. He is hoping that they go back tomorrow, but only the roads will determine that. Potential for more ice/snow/sleet is coming tomorrow and we are pretty sure that would knock out hopes of school for the rest of the week here.

Stay warm! Be Blessed!

Monday, December 13, 2010

A Good Check Up

Benji went to the cardiologist Friday.

Benji has a repaired coarctation of the aorta and a bicuspid aortic valve. Since he was a year old he has been going for 6 month checkups to keep an eye on things. His last two check ups prior to this one there was minimal change with the valve and we were praying the same for this one (or better!).

Height: 47 inches
Weight 49.8 pounds

Pulsox 97% (this is oxygen in the blood 95+ is great)
Blood Pressure in the right arm 79/64  right leg 90/55 with pulse of 65

Because of the CoArctation repair, blood pressure can not be taken in the left arm because there is not a subclavian artery. (The repair was the subclavian flap) Also because of the corrected defect blood pressure has to be taken upper and lower to ensure good blood flow. All of his stats were good.

After the doctor did the echo-cardiogram with all the measurements and everything, she said he was looking really good. Benji even did well during the check up with no crying and being fairly cooperative. He still does not like the ultrasound gel used during the echo though.

The awesome news is that everything is stable, the repair is still beautiful and the valve is unchanged. As long as he is not symptomatic our next visit is in a year! We have reached another positive milestone! YA! And that is a big praise God!

Thursday, December 02, 2010

What Really Matters...

The weight of the issues with school, illness, sensory overload, concern with other things tend to cause us (Benji's mom & dad) to lose touch with the big picture. I believe that is why Benji is the weigh he is. He is a charmer, a very intelligent and complaint child. While he may have his quirks and needs, at just the right times God uses him to point out the obvious.

Last night Benji had a spike of a fever once we got to church. We decided to keep him with us while his brothers went to class and his sisters went to youth group. Since it was not that high of a fever, we stayed in the youth center where Contemporary Christian Music was playing. We were trying to get him to lie down and rest but failed, miserably.

It was not until Benj started dancing (read spinning around in no specific pattern bumping into things while cranking up the hyperactivity) that we actually got on to him. He was bumping into thing and we were afraid he would get hurt. After the second time we got onto him, the music slowed to a worshipful song and Benji looked like he was doing a dance performance that seemed to be calculated and deliberate. Once he realized we were watching him, he stopped.

Then he looked at us and asked, "what?" Daddy smiled and said, "what are you doing, bud?" Benji smiled and looked up with his arms out gently swinging, "I worshippin' Jesus."

With all that is going on, all the craziness... There is one little five year old boy with some special needs that seems to get it better than some adults.

Thank you Benji, for your innocence.
Sent from my Verizon Wireless BlackBerry

Thursday, November 25, 2010

A Thankful Heart

 I will praise You, O LORD, with my whole heart;
         I will tell of all Your marvelous works.
 I will be glad and rejoice in You;
         I will sing praise to Your name, O Most High.    
- Psalm 9:1-2 (NKJV)

In the last year we have had much to be thankful for with Benji.
  • Another year has passed with no heart issues. 
  • At home we have 95% of sensory issues under control
  • Graduated from physical therapy!
  • A Healthy year all considering
Benji is thankful for ...

 Praise the Lord for a wonderful year! Thank you Jesus for being faithful.

Wednesday, November 24, 2010

Totally Out of Sync

While dealing with the insanity with a school system that we are frustrated with, we noticed that Benji was having a whole lot more sensory related behavior issues. He was being VERY whiny, sensory seeking, sleepy and not wanting to eat. The not wanting to eat, we contributed to his allergy medication. He takes flonase and if he takes it straight for more than two weeks his appetite wanes. That did not explain the rest though.

Tuesday morning we made a sick visit appointment for Wednesday afternoon thinking we should get him checked before the holiday but not in a rush because there was no fever.

Benji got to the doctor's office and was all over the place. In the exam room he was climbing and jumping and "crashing" and ... you get the picture. The doctor comes in and we go over everything. Benji had a low grade fever of 99.3, his ears and nose was clear and aside from a little irritation his mouth/throat was good too. Blood pressure was good (100/68) and even though he had a mucus-y cough his lungs were clear.

So Dr. talked with me for a few minutes and I shared that in Kindergarten the "Slap Cheek Measles" was going around and so was Strep. Dr. didn't think it was strep but with Benji's aortic valve he figured best to check.

Benji has strep.

Doctor - "Why do you think he is sick?"
Mom - "He is out of control with his sensory issues."
Doctor - (after getting test results back) "You might be on to something there."

Monday, November 22, 2010

A Child's Best Interest

This has been a difficult school year. We thought we knew where everybody stood when it came to Benji's needs and his education. We may not have agreed with where they stood but we thought we knew where they stood.
Over the weekend, I waited until Sunday afternoon to go through Benji's backpack from school. In an odd sense, I am glad I did.  Benji's mid nine weeks progress report was in his folder.There were three things on the report that he did not know.
  1. Character and Plot in a story
  2. The difference in fantasy and reality
  3. Counting to 50
The first I believe was just recently introduced so it is understandable as to why he has not mastered it yet. The second is a very difficult thing for a child that is VERY literal to grasp. The third would not have bothered me because he was only up to 29 on the report card, except that next to it was marked he could only count to 13. 

Many parents would think, well he just had a bad day, except 1) he has been counting to 20 for over a year if I remember correctly and 2) I was just told this past Thursday that he was doing excellent.

I took the copy I made of his report card and a copy of the progress report to the school and spoke to the assistant principal about the situation. (He was in the meeting and heard the same wonderful news I had.) There were statements such as: kids aren't really consistent at that age, maybe it was a clerical error. There was the question of what I wanted them to do, also. This response infuriates me.

1) the OT sensory and hand writing... because Benji is no worse than the rest of the class he is in, he's okay. It doesn't matter that he has regressed.

2) on the report card it claims he has "mastered" a skill that 4 weeks later he can't do and it's "normal"

And how is this in the best interest of my child? How is it in the best interest of my child to be compared to students that have not had the same opportunities as him? How is it in the best interest of my child to say it's "okay" to regress? How is it in the best interest of my child to not care if he is actually doing well academically?

Thursday, November 18, 2010

So, that meeting...

We had the meeting about the OT services. I suppose a catch up is in order.

We were notified 2 weeks ago that an evaluation had been done and that the school district wanted a meeting to discuss the findings. We had to reschedule due to conflicts but got it settled. Then on the 11th, we requested a copy of the evaluation so I could be familiar with it before the meeting. After a bit of communication I got my hands on it the 16th. As we had expected the school system's OT does not feel that Benji needs services at this time.

In the meeting we were told that he shows NO signs of sensory integration disorder and that his fine motor skills in regard to his hands are fine and at peer level. Repeatedly Benji's ability was compared to class peer level. We are VERY disappointed that the school, teacher, therapist, etc... sees no problem with the regression that we see in both handwriting ability and his sensory related behaviors.

As Benji's parent and advocate it infuriates me about the double talk that took place in the meeting. We questioned about how Benji will throw himself on the floor and his teacher said, "We do not do that in kindergarten. That is left behind in preschool." (first off... he didn't do it in preschool, he's only started it since kindergarten started) About five minutes later this same teacher openly admitted that there are some children in the classroom that "hide" under the table. After a little more discussion she again admitted that Benji will "flop on the floor by his chair" while doing desk work. (but that isn't sensory)

We also do not understand how an OT evaluation can be done with only 15 minutes in the classroom and 20 minutes in the OT room. The OT person stated herself in past conversation that children with sensory issues don't always act the same continuously. Double Standard? I think so.

Other things discussed in the meeting was how absolutely wonderful Benji is doing in kindergarten. He has all of his first nine week skills mastered and is doing wonderful for the second nine weeks. (His preschool teachers did an AMAZING job at preparing him for school.)

As a side note... We know Benji is exceeding expectations considering he has Global Developmental Delay, Speech Apraxia, Sensory Integration Disorder, plus his medical issues including his CHD, hypoglycemia, food allergies and intolerances, and the hypotonia. For the most past he is on the appropriate level for a 5 1/2 year old. As his parents we see that there are areas he has regressed in and want him to get help.

Friday, November 05, 2010

Seems we Might be Getting Somewhere

You might remember a post I wrote back at the beginning of October - It's Just Not Fair. We were very upset about an OT evaluation being refused. (It's not that we want services he doesn't need, but if he needs help it needs to be taken care of.)

So, we just got a letter today requesting my presence at an M-team meeting in about 2 weeks to discuss "the educational needs" and to "review the results of your child's Occupational Therapy evaluation".

What did I do? I sent an email to the principal at the end of September formally requesting the evaluation. I also spoke to a few people that I know in the school system casually. One of the people I talked to was the SLP that told me that she never received the "letter" from the main OT.

As I have said from the get go with this, I just want the evaluation so we know what he needs. If he does not need assistance at school, fine. I know at home he has a VERY difficult time sitting still and focusing. Having just gotten his glasses it will take at least a week for him to adjust to see if that helps with anything.

I knew something up was last week when he came home telling us that the woman wearing all yellow was asking him about his ABCs and numbers. Putting the pieces together, it was one of the therapists doing the OT evaluation.

I ask for prayer. Please PRAY that what is best for Benji is what happens. If he needs the additional therapy, then we are praying he will get it. If he does not need therapy, then we pray that it is clear he does not need it.

Tuesday, November 02, 2010

Wordless Wednesday - November 3, 2010

Tony Stark has nothing on Benji!

Glasses... and a Sensory Kid.

Mr. Benji with his spectacles
Benji got to pick up his glasses yesterday from the eye doctor. He has been SO excited about them, it is really funny. His best bud at school wears glasses too along with having some medical issues, this just makes them even more alike.

He is having adjustment issues. If you have ever needed to wear glasses, I am sure you can understand. Your eyes have to get used to the lenses. To explain this to a kiddo with sensory issues and that doesn't always get the easy things, can be tricky.

So, we improvise. Benj, do you want to play video games? Then you have to wear your glasses. Dr. said so.

So far, it's working. First day with them at school and both he and the glasses survived. What more can we ask for, right?

Monday, October 25, 2010

It's Coming in Clearly...

One of the possible problems for an infant that has been in a state requiring oxygen for a period of time, is eye damage. This has been a concern of ours with Benji but not one that is at the forefront of everything else that goes on with him. We have known that Benji has excellent distance vision for years! He would always be the first to see something of interest to himself.

About a month ago, the school system did a health screening and I figured I would follow it up with an eye appointment. I want to clarify that Benji passed the screening. Our reasoning in getting him in to the eye doctor was just for a baseline check because there are vision impairments in the family. (4 of 8 already wear glasses)

This past Wednesday Benji went to the eye doctor. During the exam it was noted that there was a slight farsightedness issue but the doctor was not positive as to how significant it was since Benji could not keep his eyes still. So he was scheduled to go back this morning to have his eyes dilated and a more comprehensive exam.

That brings us to today. Daddy took Benji in and the little guy did very well. He was very curious as to all the equipment, as to be expected. Aside from the drops in his eyes he did not mind the exam at all. Benji was very excited at the prospect of getting glasses. (This was heightened last Wednesday when he saw some with the Red Power Ranger on it.)

The results were worth it. Benji's eyes are healthy. There is no evidence of oxygen burn. He is slightly farsighted and could get away without glasses but, we are going to try them to see if they help with his focus. The doctor said sometimes the "twitchy" eye muscles can cause hyperactivity. So the hope is that with glasses he may be able to overcome some of the lack of focus issues.

Praise the Lord Benji's eyes are healthy and praying the glasses help his focusing (attentiveness).

Wednesday, October 20, 2010

Mom's Real Iron Man

Who knew? Sure Benji is a young boy and he loves super heroes and such, but who knew he would gravitate so much to Iron Man.

Being that Benji's mom and dad are products of the 80s (ish) they LOVE the culture of making movies out of comic book heroes. So it was only natural for this love to be passed down to the male children in the household. (The girls enjoy too, just not as much)
Iron Man (Single-Disc Edition)About two years ago the movie of Iron Man, starring Robert Downey Jr was purchased to add to the collection at home. We cautiously let our brood watch the movie knowing that boys are boys and imitate the action scenes. What surprised us was that Benji was quite interested in the battery Tony Stark put in his chest to stay alive.

At that point, while the action scenes still were the most watched parts, the fact that Benji related the electro-magnet in Tony Stark's chest as a heart was impressive (he was only 3 at the time).

So then we go on for a year until we hear that Iron Man 2 will be in theaters and such, Benji gets all excited about it but we decide to wait until it came out on DVD.

Iron Man 2 (Single-Disc Edition)
Once Iron Man 2 came out on DVD, we got it and Benji thought it was okay. He wasn't excited about it until Tony builds the new arc reactor with the newly created element. Then Benji starts asking us if Iron Man got a heart transplant. It was great in the aspect that we were able to talk with him about his heart and still keep it simple.

The last few months, Benji has been very aware of his heart and his closed heart surgery he had as a newborn. While he is being very inquisitive and asking questions, a parent can't help but wonder what exactly is going on in his mind. There is an obvious fear that he doesn't hide. 

Benji is very vocal about not wanting to have another surgery. We are not sure where this comes from because we do not talk about having to have a surgery. From what our doctor has told us is that his aortic valve is stable right now even though it is bicuspid and there is stenosis. In fact the CoArctation repair is "beautiful" and is doing great! The soonest surgery would occur would be once Benji hits puberty. The rapid growth is a concern on the valve.

Until then, Benji is momma's Iron Man, because his heart is pumping fine and he is my super hero!

Monday, October 18, 2010

Grief... and the lack of Awareness...

In the last couple of weeks, several children with congenital heart defects have passed away. Each and every single one of these precious ones fought valiantly for their lives, but it was not enough.

Congenital Heart Defects do not care how much money your family has, they do not care if your family has support, they do not care if you were a star athlete and took care of yourself during pregnancy. CHDs strike randomly. Occasionally there is some sort of link, but with statistics in the United States with 1 out of every 100 births having some variation of a congenital heart defect? It would make perfect sense for there to be others in the same family to have a defect also.

Not only does my mother's heart grieve for the 13 publicized heart babies that are now in heaven, it grieves for those that do not get public recognition.

I was reminded the other day about a statistic that surprised me considering the awareness surrounding it. Did you know that Downs Syndrome occurs at a rate of 1 in 800-1000 live births? Autism is estimated to be 1 in 120 children. Why doesn't Congenital Heart Defects get the same awareness?

 How can this be so?

While there have been GREAT strides in the improvement and development of procedures for correcting CHDs, there could be even more breakthroughs with more funding and more awareness.

Need More Information? Check these Websites.
To visit other sites trying to bring attention to Congenital Heart Defects, please go here.

Tuesday, October 05, 2010

It's just not fair!

I had been waiting to post about this. It is not that I am putting a particular school system or even special education down. I am very frustrated with what has transpired with Benji's education in the last couple months. I appreciate all the compassionate teachers and therapists that have worked with Benji and have got him to where he is.

My complaint, or whine, is simply that it's just not fair!

At the end of Benji's preschool career, he was more than ready for kindergarten. He was writing his name very well, knew his full alphabet and could count to 20. Plus he knew all of his basic colors and shapes (even the harder ones like trapezoid). Over the summer I casually worked with him. Not necessarily on a daily basis, but when the opportunity struck. (I believe in using the environment to reinforce what has already been taught)

So that brings us to kindergarten. There was the mandatory Brigance testing, he did well but not as good as he could have. This I contributed to him being stubborn and not knowing the teacher that was doing the testing. However, his handwriting became illegible and then we started noticing that on his classwork he just doesn't do it. He will color with the right color, but when it comes to writing he wasn't doing it. In addition his coloring became scribble.

I brought this up and was told that because he is "on par" with the rest of the class that he is fine. It seems that the way our school district interprets the IDEA 2004 is as long as the child isn't significantly behind other children in his grade and are not causing a major distraction in class that they do not have the resources to help them. I said I wasn't happy, but I knew I would get nowhere.

I then decided to focus on other issues that I knew where going on.   Benji complains about writing. He says it hurts. (In preschool because he was not a righty or lefty, he was pushed to use his right hand. His right hand is his weaker hand due to his medical stuff.) So I asked about doing the OT evaluation that both his PT suggested and that VCH had suggested. By the time my request got back to the OT that does the evaluations, she assumed that I was complaining about Benji's sensory stuff. (Benji has sensory integration disorder as dx by Vanderbilt Bill Wilkerson and agreed on by Vanderbilt Childrens) Instead of calling a meeting or sending me an email or letter, the OT confronted me at church. I was dumbfounded. I was also speechless because I was told that I didn't know what was best for my child. I was also lied to.

I am not going into details because it doesn't matter. The school system is refusing to do the OT evaluation. So now, I have to schedule an OT evaluation, again, so that he can get the help he needs. Yes, he has sensory issues. The good thing is we have them covered at home. I have been trained how to help him with that and we work with him. The reason behind his OT evaluation is because I suspect he may be a lefty like his brother and writing with his right hand is awkward for him. He no longer holds pencils and crayons correctly, even with the grips. His left hand is weak. He needs help, but until he is substandard he can not get it from the school system.

Monday, September 20, 2010

A Hopefully Typical Day

When this post actually posts, Benji and his brothers will be in our Expedition on the way to school for another wonderful magnificent Monday. (We believe in thinking positively. Our words are powerful)

Benji was adorable Friday when our family went to celebrate Uncle Marc's (and Uncle Frank's) birthday. As we were leaving he grabbed one of those cable internet mailing cards and decided it was Un Ma-cs birthday card "that you have to turn over". He was very animate about the card and I don't think I can explain it and give justice. For about 30 minutes he just wouldn't let it go.

Saturday, Benji has made a new friend that he thinks is just his own. We will call him T. The three boys had a WONDERFUL time playing with T. They played outside, they played in our house, they played next door. They had a lot of fun. Just where Benji was perservating on the card Friday, after T had to go he just kept on about how he missed T and hoped to see T again.

This weekend reminds our family how unique Benji is. Now we just pray his "quirky" tendencies calm down and he has a good week.

Saturday, September 18, 2010

Little Bowen

I have just recently heard about baby Bowen. He is the child of Matt and Sarah Hammit. Matt is with the Christian band, Sanctus Real. They're website about Bowen's journey is Bowen's Heart.

I was reading about what they went through when Bowen went into arrest on Tuesday and things were at their darkest. It transported me to when Benji was in the NICU before his surgery. I felt the raw emotions, I cried, I sobbed. I think most parents that have had their child in the life and death situation go through a time when they know they have lost their child. It's just so finite that it will happen. I can't speak for other parents though. I only know how I felt.

When we almost lost Benji there was a swarm of emotion of pure raw emotion. See, Benji coded two days before his surgery. The nurses had told us he was stable things were good, we should go out and get a nice dinner. We did. I wish we hadn't. While at dinner we were called with that "You need to get back to the hospital ASAP" call. We did. When we did, Benji was stable again and we were not positive as to what happened. They had tried weaning him off of the medicine that was keeping the patent ductus open for blood flow so they could see just how bad his CoArctation was. By the time we got back up to him they had him stable and the meds going, we didn't SEE the rescue efforts.

I bring this up because I know the knot in the throat and the test of faith and the scream out to God of  "Not My Son!" I was shaken to the core because the only person I could trust to save my baby, was God. I knew that it didn't matter what doctor or nurse was there, that if God wasn't involved it wouldn't matter.

Matt and Sarah's faith was tested too.

"Everything I’ve watched happen in this hospital, all the pain I’ve felt, is deepening my faith, strengthening my marriage, and molding my character." (
 By going through the trials, God has made us stronger. God has strengthened our marriage. God has given us the compassion to reach out to others with that similar pain.

I pray for Bowen. I pray he become a strong and righteous man. I pray his family stay strong in the Lord. After all, "If God is for us, WHO can be against us?" (Romans 8:31)

Friday, September 17, 2010

Newborn Screening Pulse Oximetry

I was elated when I saw the status on Cora's Story at Facebook that pulse oximetry has been voted YES to be added to the newborn screening.

For many children with a congenital heart defect it can be detected by the use of pulse oximetry. It is a non-evasive test that takes only a minute or two.

It does not detect ALL CHDs but it detects a lot more than would be detected without it. It also can detect the defects sooner than other methods.

For more information on the Vote check out Blog4CHD

Tuesday, September 07, 2010

I Feel Like A Monster

Benji has been having a wild week.

We found out he had strep last Wednesday even though he wasn't acting "sick". (Parents of kids with sensory issues know what that means, absolutely NOTHING) After figuring out what medicine he could take (allergic to red dye) we got him settled and on the mend. It wasn't until Friday that he acted like there was something wrong. Friday morning he was mopey and just wanted to lay around. His fever spiked a little too.

He is on the mend though and even got to enjoy his last game at Miracle Ball Friday night.

Saturday he was listening to his favorite CD at the time, Awake by Skillet when he looks at me and says, "I feel like a monster."  At first I thought he was asking for the song, Monster, but then I realized he wasn't. There was a complex look on his face like he was trying to figure out how to keep from doing things. He told me, "I can't stop doing things." and "My body does things without me making it do them."

I didn't really think a whole lot about it when he said it. We are used to Benji saying odd things, it's just part of who he is. But then, I re-listened to the song.

"I feel it deep within, it's just beneath the skin
I must confess that I feel like a monster"


"My secret side I keep hid under lock and key
I keep it caged but I can't control it
'Cause if I let him out he'll tear me up, break me down
Why won't somebody come and save me from this, make it end?"

~ partial Lyrics to "Monster" by Skillet

I am astonished about how my son has latched on to the lyrics of the song. Sure, I can relate to some of the lyrics myself, you know on those bad days, but for my 5 year old to grasp them and relate to them, it really hits home. Especially when he is borderline autistic. Then, the autistic part is what makes me understand what he relates to. Those "motor-driven" moments when he feels like he has no control.

As an end note. Benji is feeling much better, he will be going back to school tomorrow. (today was an inservice day)

Tuesday, August 24, 2010

Sensory Friendly GiveAway for Back To School!

Soft Clothing and Hartley's Life with 3 Boys is doing a giveaway that is sensory friendly for back to school! There is a ton of stuff they are giving away to one winner. The catch is that it ends at midnight on September 1, 2010. So you are going to want to head over to the Soft Clothing :: Back To School Giveaway.

Here's the stash:

3 pack of Soft Sensory Tees in color/size of your choice
6 pairs of Soft Seamless Socks
"This is Gabriel Making Sense of School" by Hartley Steiner
Lands End Uniform Backpack
Classpack of Crayola Colored Pencils
Tactile Fidget
Desk Buddy Sensory Bar
6-Pack of Mead Spiral Wide Ruled Notebooks
4-BG Flash Drive
12-Pack of Crayola Washable Fine-Tip Markers
Peltor Junior Noise Protector Headphones
Classic Pencil Grip Pencil Sharpener
4-Pack of Sharpie Highlighter Pens
3-Pack of Pink Paper-Mate Rubber Erasers
2 Mead Classic Composition Books
Plastic Hinged School Tool Box
Max's Mud-Natural Sculpting Dough
Pocket Stixx Oral Motor Tubes

While you are over there, check out what all Soft Clothing has to offer!

(product links are for examples only, may not be exact item in giveaway.)

On the 10th day of school...

Hard to believe that Benji has been in Kindergarten for 10 full days.  - Mom

School is different now that I am in kindergarten. We get all these papers and crayons and I just want to draw, but the teacher tells me I have to do what the paper says. Mom is concerned that the weakness in my right hand is back. She says she is noticing that I am not writing and drawing as good as I was when I was at pre-K.

My teacher sends home a sheet with my name in dotted lines for me to trace. I can do that pretty good. It's just when I do it on my own, it looks like scribble scrabble.

Mom has been working with me alot, we do flash cards at home with shapes and colors plus numbers and counting. The last couple days we've added letters and a couple words.

I am still very tired when I get out of school. I don't want mom to know so I get hyper and silly. Sometimes after school mom makes us play outside so "we get the wiggles out" or we can get in the pool. The pool reinvigorates me, ssshhh, don't tell mom. :)

Wednesday, August 11, 2010

Wordless Wednesday - Play Ball

This past Friday was the first ball game of Miracle Ball. I love this group! It shows what one person can do to make a difference. One parent saw the need for a special needs athletic group and did something about it. Now, kids that can't play on regular teams, can play with this group.

Tuesday, August 10, 2010

First Day of Big School

Today is the first day of Kindergarten for me. It's just going to be the boys in class today. I'm a little anxious because the only person I know in my class is a girl and she won't be there until tomorrow.

I wonder what we will do. Will the other kids like me?

Mom worries how I will do too. I heard her talking to dad about it. She's afraid I will have problems. I got really hot Friday evening and my blood sugar dropped. Mom and Dad caught it and were prepared, but with people that don't know me she is concerned about if they will pick up on the warning signs.

Then the whole sensory stuff. I don't like the big room called a gym. It hurts my ears. At least that's how it was when we had the "open house".

I want to have a good time. I really like going to school. I am just hoping that school likes me.

Monday, August 09, 2010

Last Day of Freedom! j/k

Today is the last day of my summer break. I go to school tomorrow.

Mom is keeping it relaxed today. I get to play my video games (Lego Batman on the PS2). I love playing video games!

If the pool is clean enough we will probably go swimming too. Swimming is so much fun, and it's a great way to keep cool! (Plus it helps with sensory stuff A LOT)

I am a little anxious. I will be going to a new school with a new teacher and with new friends.

Today though is all about fun!

Mom is keeping an eye on me though. We had our first Miracle Ball game Friday night and from the heat, my sugar dropped a bit. Mom had it under control with some Juicy Juice and a snack bar. Got me back to normal pretty quick all without causing a food issue.

The game was fun! We played two full innings. I got to run the bases twice! (There will be a picture on Wednesday) I also got to see some of my friends from my old school and enjoyed playing with them.

Plus!! My godmother came up to see us this past weekend! That's her with me and Bubba. She got to go to my game and stay for Bubba's birthday party. We were so happy to see her. I <3 you Gale!

Wednesday, August 04, 2010

Going to the Dogs...

While my brothers and sisters started school yesterday (Monday, August 2) me and mom had a day. I did my kindergarten testing first thing, spent some time at Nana's and Papa's and then... and then... I got to go to my first movie in a movie theater!

Back in May, my brothers got to go to see "How To Train Your Dragon" at the Movie Theater as a reward from their school. Me and mom were going to go but it did not work out. So mom promised me a movie next time one came out that I could see.

We got to the Roxy at 11:50am, got the ticket, then got in line to buy a drink and snack. (I wanted popcorn but, there was too much stuff on my no-no list)  By the time we got through the line, went potty and got into the theater, the trailers had already started. (There is one about Owl guardians that really looks interesting) Anyhow, then the movie begins. I must say, we watched Cats & Dogs not that long ago, but this was AWESOME. I recommend everybody go and see Cats & Dogs: The Revenge of Kitty Galore.

Being that I am five years old and that I do have sensory processing disorder, I was able to sit and watch the entire movie. (122 minutes) The only time I had to get up was when I had to run to the potty and I was quick, I didn't want to miss anything. We went right at noon, as said, and there may have been a total of ten people in the theater. Mom was impressed with me being able to stay focused.

I loved Diggs, he is a K-9 dog with problems. His antics are funny. He likes to act before thinking a lot.

Anyhow, I give this movie two thumbs up!

Tuesday, August 03, 2010

Gross Motor Excellence

Mom took me into physical therapy this morning for my yearly evaluation. I had a hard time concentrating. Mom thinks with all the back to school stuff and routine changing that I am over-stimulated. My pt agrees and is concerned.

The awesome news is that for 5 1/2 - 6 year old skills I have them pretty good. I need to work on throwing accurately and catching but I meet standards! WooHoo!

The down side... I am VERY moody, I am getting fixated on things instead of paying attention, I am sensory seeking (i.e. sucking thumb ALL the time, twirling hair ALL the time, rolling on the floor) and I am upset I don't have a schedule yet.

School starts for me full time Tuesday. Mom is concerned about my food allergies and how I will handle being in school. I really want to be in school. I tested with Ms. A and I really like her and her classroom. We just don't know if she will be my teacher or not. It's really hard not knowing.

Mom did find out this afternoon that there will be a transition meeting for my needs Friday morning. We are praying everything works out well. While my sensory stuff can get quite distracting, with the right help I can thrive in a regular educational environment.

Monday, July 26, 2010


Benji is fundraising for Saving Little Hearts and he needs your help! The fundraiser ends August 1st.

We have a late start, there are others WAY ahead of us, but our goal is to support Saving Little Hearts INC.

What do we need you to do? Go to

Then make a donation. The donation goes to Saving Little Hearts so that they can send out more care packages to families that have a child going through surgery. In addition, the child that has gotten the most money raised will be on the cover of the 2011 Saving Little Hearts Calendar.

Saturday, July 24, 2010

Silly Saturday - Bowling Alley

So, as I eluded to in the previous post, we went bowling today. All and all we had fun, and Benji got a strike!

We know that Benji needs to build his endurance so we try to do things that help. With the promotion this summer, we have gone bowling several times. Most of the kids really like it.

Today Benji used a 6 pound "junior" ball through the first game. (This strike was in his first game) In the second game he got very tired and we used a ramp for him so he could still bowl, it just didn't take so much out of him.

Momma's sweetie.

 Please forgive the bluriness... he would do this everytime he bowled... no wonder he got so wore out. He would throw himself down and then roll around and finish it off by hopping like a frog. :)

Reality points out Regression

As most parents know that have a unstructured summer break, their kids have a slight regression where they forget some things or start acting out do to lack of schedule.

Up until today, this is what I thought was going on with Benji.

He has wet the bed probably about 5 times in the last month, and while that may not be OMG bad, for him it is very unusual. Once he potty trained he never had an accident until now. To have 5 in the last month...

If night time pottying issues were the only issue I still wouldn't be really concerned.

We have noticed immature behaviors surfacing. Things like constantly sucking his thumb and twirling his hair. Throwing himself on the floor. Very much sensory seeking type behaviors. Also baby talk has come back.

With all of these behaviors I didn't really think it was that bad, until we went to the bowling alley today. Benji's sensory stuff really kicked in. Loud music, stimulating atmosphere, the process of bowling... midway through the first game he was wanting deep pressure hugs and his silky. We played two games and wasn't sure he would make it through the second one. He would put his head on the vent that bowlers use for their hands and let it blow his hair. He kept throwing himself on teh floor and rolling around. It wasn't the things he was doing that stood out though, it was the way he was doing them.

This all just brings back my concerns over the school change and his lack of Occupational Therapy. Just praying on that one. I already know the focus is going to be about the heart condition, but he has tone and sensory issues that have to be addressed for him to succeed in school.

How can a child learn if the classroom is distracting? How can a child learn if the noise hurts?

One day at a time and relying on God. That is the only way we can get through this.

There was one moment when we were getting ready to leave this morning that he just stared off. It took me shouting his name to acknowledge us. This isn't the first time, but shoot... I day dream and it looks like I am just staring off. *sigh*

Wednesday, July 21, 2010


So, mom says there has been a change in plans with school. It seems that because of increased enrollment that I won't be able to go to the school we thought I was going to. I am not too sure what to think about it.

I will be going to school with my brothers though so it can't be all bad, right?

Mom says she just has to be more diligent about my IEP now. Since the new school doesn't know me, it's going to be like meeting a stranger. I can tell she is worried. It's like there are certain things that have to happen and then there are things that need to happen and what decides which is which.

I hope the new school is fun.

Tuesday, July 13, 2010

Getting Ready for School

So, I found out that one of the reasons mom organized her desk is because she is working on making a packet for my kindergarten teacher and the school nurse.

Mom is a little nervous about me going to kindergarten. IT doesn't seem to matter that I was in preschool at the same school since I was three. She says the difference is that it was only 3 or 4 half days a week, instead of 5 full days.

The things mom has to do for me are a little different than for my brothers and sisters. I have one sister with asthma, but that is pretty straight forward. She has a doctor's release for her inhaler at school and that is about it. One of my brother's has some sensory stuff like me, but it's mild and that's a simple "Hey, he needs to not be over stimulated or he gets very anxious and hyper."

For me, there is so much going on under the surface. I suppose it's like a creek or river, it looks calm and still put under the surface is a strong current.

The obvious with me is my heart. Having the bicuspid aortic valve with stenosis, I need to be watched for fatigue and cyanosis. So for recess and physical education I need to be allowed to rest. Then I have officially ketotic hypoglycemia. My blood sugar drops when I am sick and when I get hot. I usually only have problems during the heat of summer or if I get sick. We have a glucose meter to watch it, plus I can only have natural sugars. No HFCS, no splenda, no aspartame, no saccharin. The endocrinologist really emphasized that, said the others are obvious, but HFCS (high fructose corn syrup) is really bad. It is not recognized by the body as a sugar, plus the body craves it so you would eat more of it than you would something with sugar in it.

I have food intolerances too. I can't tolerate dairy products at all. It's gotten to the point to where I have really bad tummy aches and throw up. While that is a bad intolerance, it's not the one that worries mom. I have a VERY bad reaction to things with red 40 dye in them. I get EXTREMELY hyper until I pass out. (last time it happened it went for about 11 hours) Then when I wake up I feel like I have a "hangover" (dark circles under the eyes, headache, tired, sensitive more than usual). These worry mom because most people don't understand that not eating this foods isn't an option. It's a have to avoid.

Then the rest of the stuff is the mild hypotonia, the sensory integration disorder, etc.

Anyhow... mom is looking to gather everything together to make her little packet and also get doctor letter's to verify. Please pray for her. She gets emotional sometimes when dealing with all of my stuff. She wants things perfect but knows it's not possible. :)

Monday, July 12, 2010

Hey There Friends!

Hey there! I am reaching out to my Congenital Heart Defect Friends. I want to make a page to link to all of my friends so that others looking for CHD information can have a place to look for it. In fact... We are making a linky....

Please list your CHD website information for the Thumbnail Linky below.

Saturday, July 10, 2010

And the Bumble Bee said Buzzzzzzz

Today was a scary, yet exciting day. I was playing outside with my brothers while daddy was working in the yard with G2. Mom was making Iced Mochas, YUM!

While I was running around all of a sudden I felt a sharp pain in my leg and looked down and saw a weird reddish orange bug. I cried, daddy scooped me up and ran me in the house as I told him something stung me. Mom grabbed an ice pack and started talking about how irritated she was with Johnson and Johnson along with McNeil Labs. Apparently, I can only take Tylenol (or acetaminophen) if it is dye free and in rare cases I can take Benedryl, again dye free. With those medications on recall right now, there isn't anything over the counter that I can take.

The good news is that with the ice and elevation, the poison from the sting stayed put. Plus, Papa offered trying a wet aspirin on the sting held on with a bandage... it worked. After an hour of laying on the couch and playing video games, the sting site was no longer swollen and the pain was gone.

Now... my irritation with pharmaceutical companies can be expressed...

It seems that Johnson & Johnson knew of problems with their children's Tylenol and Benedryl long before the FDA stepped in. Complaints are over a year old in some instances. While not everybody has to have dye free medication, I do. Honestly I don't understand why they put the dye in the medication. There are no benefits from it. In the last few months in our small community we have discovered several others that also have to avoid red 40. My symptoms are a rapid heart rate and extreme hyperactivity. It lasts for hours and when I finally collapse to go to sleep, I sleep and sleep only to wake up with my head hurting and feeling horrible. My cousin gets sick off of it too...

Anyhow, what good is medication if I can't take it because of the "inert" or "inactive" ingredients?

Wednesday, July 07, 2010

Support Saving Little Hearts #chd

When my mom and dad found themselves sitting in the NICU at Vanderbilt Children's Hospital having just learned hours earlier that their beautiful little boy had been born with congenital heart defects, there was one group that gave them support.

Saving Little Hearts had a support group to meet in the hospital while I was there and they also provided mom and dad with one of their surgery packages. The package was great! There was information on what congenital heart defects were, there was Ronnie the Raccoon (which we still have), some snack foods, calling cards, and alot more. The care package let my family know that somebody cared and that they weren't all alone.

So now it comes time to support Saving Little Hearts.

Saving Little Hearts has a chance to win $20,000 from the Chase Community Giving Program but we need everyone's help. All you have to do is go to and click on “vote now." There are only 5 days left and if we can get into the top 200 charities we will receive $20,000 for surgery care packages. Please vote and ask everyone you know to vote. This donation will change the lives of so many families. We can't do it without you. Thanks for your help!

Wordless Wednesday - 4th of July

Our next door neighbor decided to get fireworks and shoot them off at their house. Rather impressive, rivaled the big fireworks in White Bluff on the 3rd... obviously got better pictures on the 4th.

Having a good ole time!

Friday, July 02, 2010

First Lost Tooth

In the middle of Kroger out came the first wiggle! What a big boy!

Wednesday, June 30, 2010

Wordless Wednesday - June 30, 2010

I'm.... having fun in the sun.... Got my sunscreen on.... Having fun in the sun!

Monday, June 28, 2010

Still wiggling

Having a difficult time with these two loose teeth. One is very loose and barely hanging on, but I am afraid to pull it. G3 has been helping this morning, but I think it is going to hurt so I stop her from pulling it.

See it?! It's very loose... the other one is just barely loose, but the dentist said it needs to come out too.

I tried to eat an apple last night, but it hurt. 

Mom says it will come out when it's time, I heard her telling daddy that. Plus I have had sensory issues with food, so why not with my teeth... I think it would help if I could take Tylenol, but we haven't been able to find the dye-free yet. I don't like it when mom crushes the Tylenol tablet and puts it in pudding.  It still tastes bad. 

Anyhow... keeping on the wiggling...  LOL

Just keep wiggling!

Saturday, June 26, 2010

Silly Saturday - June 26, 2010

This week's Silly Saturday is brought to you because Benji went gaga over his Lightning McQueen Hopper when we pumped it up with air this morning. He was .... well... perhaps you should watch.

As you see in the video... he was very silly... :)