Friday, January 28, 2011

Disorder of Childhood ... in response to a question

Benji was diagnosed with Disorder of Infancy, Childhood, or Adolescence NOS nearly two years ago. Essentially what the diagnosis says is that the child is not developing typically and there is a suspicion of a disorder in place. Having the diagnosis of Disorder of Childhood NOS gives the developmental pediatrician room to do more testing and more observation. Many childhood disorders can not be correctly diagnosed until the onset of adolescence.

313.9 Disorder of Infancy, Childhood, or Adolescence Not Otherwise Specified
This category is a residual category for disorders with onset in infancy, childhood, or adolescence that do not meet criteria for any specific disorder in the Classification. (taken from

In Benji's case, at the time of diagnosis he had speech apraxia, mild hypotonia, and sensory integration disorder. To be on the conservative side, doctors are waiting to see what age and therapy takes care of for him. It is fully possible that the speech, tone and sensory issues are all related to his heart surgery that was required to repair his aorta. It is also fully possible that the onset was coincidental. Benji does have difficulty in social situations. He is also very focused on things of interest and distracted when it comes to lack of interest.

To be honest, we are praying that Benji is cured of all of the issues and not have any diagnosis. Until that time however, we will be working with his doctors to determine what it is that is going on. One of the hypothesis that is in contention is that Benji has a form of Asperger's Syndrome. This may or may not be the case.

Wednesday, January 12, 2011

A BIG Thank You to @TadorDoodles

I sent out a plea last week for somebody to make a button for the CHD Awareness here on Benji's Broken Heart. Lisa Baldwin (@TadorDoodles) happily volunteered. She did an AWESOME job, especially considering I didn't know exactly what it was that I wanted.

I love them! Thank you so much Lisa!

Lisa can be found at Chaos Appreciation

Sensory Processing Disorder is REAL

"Everybody has some sort of sensory 'issue', especially in kindergarten."

Ever heard a phrase similar to that? Ever get down right mad when it was during your child's IEP or 504plan meeting? Ever have your child's SPD symptoms completely dismissed even though you have an official diagnosis from one of the top Children's Hospitals in the country?

We have heard this. Not just from his current school. Other places too.

Benji is tactile defensive, oral defensive, visual and auditory defensive while also being deep pressure seeking. He is able to function because we work with him and he has had therapy for most of his life. Yet, there are still issues.
  • He will fall out of his seat for the deep pressure
  • He will fall to the ground.
  • He does chew on things 
  • He will refuse to eat something because of how it looks or feels
  • He can not focus in a room that is loud and busy
  • He has a difficult time going to stores, malls, or public play areas
 There are some fun quirks too. Benji can blow your mind with his intelligence if he decides to share it with you. He is very stubborn, but in the same light once he decides to do something it will get done. So, while he may not sit still while doing quiet work or during circle time, most of the time he is fully aware of what is going on and taking it in.

There are ways to treat Benji's sensory issues.
  • a sling swing 
  • BIG hugs
  • jumping on the mini trampoline
  • carrying a heavy ball up and down the hall
  • simple exercises (jumping jacks, sit-ups w/ exercise ball, touching toes)
  • playing in dry beans
  • painting with shaving cream
  • nice warm epsom salt bath (15-20 minutes)
  • soft long sleeve shirts w/o tags
  • allowing his silky (piece of satin fabric like a security blanket)
There is more, but that is just an idea. When his SPD gets out of control there is only a limited time that we have to stop a meltdown. He gives us warning signs.
  • He starts getting clingy or appearing tired
  • Sucks his thumb, twirls hair
  • Starts rocking if sitting
  • Gets whiny (at this point the environment HAS to change)
  • meltdown
A meltdown is not the same as a tantrum. Tantrum are typically because a child didn't get something they wanted or wasn't allowed to do something they wanted to. Tantrums you can let the child get it out and in a couple minutes it is done. This is not the same for a meltdown. Meltdowns are the child letting you know that their body just can't take it anymore. The child is not in control once a meltdown strikes.

So PLEASE, PLEASE, remember, Sensory Processing Disorder is REAL!

Can you help me? Trying to get the word out...

I am being ambitious for the beginning of the year, but aren't we all?

Did you see my post about wanting to post Congenital Heart Defect stories for Heart Month in February? I really need some submissions. I have a couple, I would like to have at least 28 before the month of February starts. See the original post here.

On top of that, I would love to do an online birthday party for Benji during the month of March. His birthday is March 2. He will be 6. To do this I would love to be able to promote YOUR product. Are you interested? Benji loves a variety of different things. Please email me if you have an idea. Remember, Benji is a CHD survivor and has sensory processing disorder.

We would also like to feature websites and guest posts in April for Autism Awareness. The more submissions we can feature the more awareness will be out there.

If you have ANY questions please email me. I look forward to my email being loaded down with submissions!  Email at faith(at)heaveninourhearts(dot)com

Tuesday, January 11, 2011

One Day At A Time...

Seems when yesterday's post was made we were not finished. Last night after dinner, Benji's sugar did the roller coaster again. We do not know why it is doing it, and in fact it's doing it already some tonight.

Benji being his cute self... as Iron Man
Called the doctor about it and given the weather conditions and that we have it pretty much under control, we are going to wait. It isn't a critical issue unless the sugar level goes under 60 and we aren't letting it go below 70. The one thing we think might be doing this is a growth spurt, but if that is the case it makes me wonder what we are going to do once we reach puberty!

Hopefully after tomorrow, our road will be clear enough for me to be comfortable driving. It is within a mile of the house that it is bad, once we get out as long as we stay on the main roads they are in good shape.

We wouldn't mind prayers for Benji. After surviving the surgery for CoArctation of the Aorta and thriving with a bicuspid aortic valve, hypoglycemia will not be an issue! I refuse it!

We will just take it, one day at a time.

Monday, January 10, 2011

No such sweetness - hypoglycemia

One of Benji's medical conditions is ketotic hypoglycemia. This diagnosis was received December 2007 after he had an episode that resulted a trip to the hospital. The ketotic hypoglycemia is a diagnosis of exclusion. The doctors know that Benji's sugar levels bottomed out (that time it dropped to 22) and that there were ketones in his urine. However when they did the fasting test, they were not able to get it to happen again.

Since then, there have been little episodes where Benji's sugar will dip. Like during the summer when it is hot and he is sweating, if we don't keep an eye on him his sugar will drop and I get a very sick kid. During the winter the problem usually stems from Benji getting a bug and not eating well, then at night his sugar will dip.

Last night was one of Benji's episodes. I missed one of his warning signs before we ate sandwiches for dinner. That sign was the VERY sweet breath he had. He didn't have the lethargy he typically gets, or even the crankiness. Although he was very set in his ways.

About an hour after dinner he came to us saying that he was 'starving' and that he would 'die if he didn't eat.' Immediately we were concerned and checked his sugar. It was 78. This is not a dangerous level, but since he had eaten an hour prior it should have been in the mid to high 90s. We fixed him a ham sandwich and got him some juicy juice. An hour later it was 122. The spike is what I was concerned with, because sometimes sugar levels will spike up and then drop.

 We asked for prayer when his sugar was 78. And we thank everybody that prayed last night. When I checked his sugar at 12:30a it was at 98. We praised God and went to sleep. This morning he is fine.

Sunday, January 02, 2011

Seeking #CHD Stories to Showcase in February

Seeing that the month of February is typically Heart Education month and Heart Health Awareness, we want to draw attention to Congenital Heart Defect Awareness. We would LOVE to be able to have a heart story about a patient and their family or feature an organization that strives to bring attention and/or help to the community.

If you are interested in submitting a guest post to our blog with your heart story or would like to submit a post about your organization, please leave a message in the comments.

We would also like to remind you that we have a CHD blog hop HERE.

Looking forward to a full inbox!

EDIT:: I suppose it would help if I included my email address...  Please send stories to faith(at)heaveninourhearts(dot)com with the subject of CHD Awareness