Tuesday, February 20, 2007
At the time of this evaluation, Benji was a 22 month old. He was referred to Foundations by TEIS with a diagnosis of having congenital heart defect. Benji is being seen by Foundations twice a month and currently has AFO's to help support and strengthen his ankles due to having low muscle tone. Benji stays at home with his mother and three year old brother during the day.
Benji is an active 22 month old who was cooperative throughout the evaluation and his results are believed to be an accurate representation of his current developmental abilities. He was in good health at the time of the evaluation and has a very supportive family. It seemed during the evaluation if Benji liked a certain toy or activity he seemed very focused on it and became unaware of his surroundings including not responding to the calling of his name and asking him questions. However he would not attempt certain activities due to lack of interest in them. He was evaluated on January 30, 2007 in his home environment, reporting by his mother and some structured activities facilitated by the assessor. Benji is showing a significant delay (20% or more) in the areas of adaptive, personal-social, receptive and expressive communication, gross motor and the cognitive area of development at this time.
I'm not going to include everything else. Essentially, Benji is having problems. About 2 weeks before this evaluation was done I had noticed that Benji seemed infantile. His expressions and characteristics. But then 5 minutes later he seems to be all grown up. We know that Benji has sensory issues. The issues are mostly touch and oral, not that that make it easier. He still eats mostly typical older baby food... you know applesauce, eggs, pudding, mashed potatoes, chicken nuggets, french fries. Sometimes a cut up apple or raisins, whales, cereal bars and cereal as long as it is round or circular. Touch wise he really prefers the silky fabrics and he don't like to have no clothes on.
Now.. we are continuing with Benji's therapy and Foundations is going to have a speech eval done to see where he is and what he needs. So the fun continues!
Wednesday, February 07, 2007
Today marks the first day of CHD Awareness Week. You may not know exactly what CHD is but I encourage you to find out. Prior to our little Benji being born we had only heard one other case and it was one of my cousins. It still didn't really mean anything because she had other things wrong.
Benji was born with 4 defects. He was born with
PDA, that is where the temporary valve that flows from the pulmonary and aortic arteries doesn't close after birth,
CoA, that is coarctation of the aorta where the main artery that comes off the heart is narrow and the blood can't freely flow,
Bicuspid aortic valve, instead of having three flaps in the valve like a health heart does there is only 2 flaps causing the blood to flow both ways through the valve
Aortic Stenosis, this is a side affect from the others. The aorta around the valve has gotten thick and narrow.
When Benji was a week old (born March 2, 2005 surgery was March 9, 2005), the surgeon removed the PDA and repaired the CoA with a subclaivian flap (essentially used another artery to fix it). We are told that Benji will eventually have to have another surgery to fix the valve. We are praying that God fixes it himself, but are also praying that if it is another surgery that it will be later in life so that the likelihood of another will not be as great.
I encourage you to read up and support CHD efforts. It could very easily be affecting somebody you know, a sibling, a friend, a child, a neighbor... anybody.
Labels: CHD awareness
Picture is from the camera phone so not the best.. but it does show Benji in his transitional bed. He is doing very well sleeping in his bed, it's just getting him to go to sleep that we have the problem. :)
The rainbow blanket under him is the one his Nana made for him and the shiny fabric is a stain night shirt that he has fallen in love with. Not sure if it's cause it smells like momma or because of the texture.
He's 23 months old already! Where has the time gone?