Benji's Broken Heart

Happy Birthday Benji!

Wow! It's been a year! Hard to believe. God has been so good to little Benji.
Benji has come a long way, he is still being monitored closely by his heart doctor. We are up to 4 months between visits. His heart has not gotten any worse since he was 4 months old. Benji is still getting therapy through Foundations. He has low muscle tone and after his last evaluation his feet and ankles are going to have to be watched. Other than that, he is finally starting to want to eat regular table food.. some, not all. He is jabbering sometimes we make out his words.

I will update more later. Just wanted to announce Benji's birthday!

What it means to be the parent of a heart child

Today is National Congenital Heart Defect Awarenes...

Today is National Congenital Heart Defect Awareness Day

Please take this time to think about Heart Defects, it occurs in 1 out of 125 births. It can as simple as a self correcting hole to a defect that requires a heart transplant to a defect that ends in death. If you have kids or know people with kids make sure they are aware. Some defects go years without presenting.

New Pictures

So, our local Walmart is doing a cutest baby contest at their portrait studio. The winner gets a free 10x13 puzzle portrait. I decided to take Benji since the last pictures we had done was at 3 1/2 months. They came out incredibly cute!

Echo update and IFSP

Benji had his IFSP last week on January 18th. He will be continuing his therapy every other week. He is improving, but his muscles in his legs are still week. He will also have an eating evaluation on the 30th. He bites but he don't chew very well, if at all. So, that will be done. He has progressed very well.

While TEIS and Foundations were here for the meeting he did two things he had never done before. The first was he was dropping his pop ons through the exersaucer seat and watching it. He was doing cause and effect! At 10 months! Wow! The second thing he did was while he was dropping his pop-onz through his exersaucer, he was standing up, by him self, without holding onto anything. Of course as soon as he realized he was doing it he sat down. I think it scared him that he was standing. He didn't know what to do next.

Anyhow... he is now cruising around the furniture easily. He will walk with his walk behind toy. Benji has started to defend himself against Josh and Micah. He won't let them just take his toys anymore and he sometimes takes toys away from them.

It was so cute, Jeff took the boys to the store last week when I was sick and Micah had a cookie in each hand. Benji turned around and grabbed one and stuck it in his mouth before Micah knew what was going on. LOL... so cute. Obviously Micah wasn't too happy about it.

Then we come to today. Today Benji went to see Dr. Hermo-Weiler. He now weighs 21 lbs 12 ozs. Dr. Hermo is a bit concerned because he has only gained 12 ozs since his October check up. On the other side... the stenosis in the aortic valve appears to be unchanged. He wasn't really cooperating during the echocardiogram wanting to do it himself or crawl off the table. She got a couple good meassurements while me and one of the aides were holding him. This is SOOOO AWESOME!! On top of that his blood pressures were close. His right arm was 92/50 with his pulse at 117 and his right leg was 95/64 with his pulse at 132. When she did his pulsox oxygen was 97-98% and pulse was 122 on the left foot.

The CoArc repair still looks beautiful! And she don't see him again until May. He does continue on his Propranolol.

Praise the Lord for He is good.

Hello! Pictures! and new abilities!

Hello, first off we want to share pictures! Mom and Dad did our new annual tradition of Christmas pictures with all of us. It came out pretty good, of course I think the fella in the red made the picture. I of course may be partial, since that is me! I have been having alot of fun lately. Mom put up this really pretty tree with shiny things on it. Of course I like shiny things so I would love to grab them. There are also stuff under the tree but, they aren't shiny so they don't really interest me. My brothers seem to be interested though.

Mom gets so excited here lately. I discovered my hands and I like to wave. I also like to clap now too. Things are fun, I hope these sparkly and shiny things don't go away. I also enjoy it when my sisters have friends over. Their friends give me so much attention and would rather look at me and talk to me than do what ever with them. Mom says I am an attention hog.

I disagree.

We did go and have fun at the playcenter in teh mall while mom had to take a few things back. I had fun there. Especailly when I was running from my brother Micah. I suppose I shouldn't say running, more like crawling at the speed of light. I am surprised mom got a picture of it.

We did have alot of fun.

Results from Assessment on 11-10-05

Benji had an assessment completed on the 10th of November. The assessment was the Battelle Developmental Inventory and it was done at home by his early intervention teacher. At the time of the assessment Benji was 8 months and 8 days. As you can tell, this is a month old. He has progressed further in some areas already. Our little guy is getting strong and very smart!

Personal Social
Personal social domain test skill related to adult interaction, expression of feeling/affect, self-concept, peer interaction and social role. Benji scored at 7 months, 1 month below his chronological age. He plays peek-a-boo, expresses his emotions, and responds to his name.

Adaptive
Adaptive Domain tests skill related to attention, dressing, eating, personal responsibility and toileting. His total score was 10 months, 2 months above his chronological age. Benji holds his bottle to feed himself, attends to one activity for 3 or more minutes.

Motor
Motor domain includes both fine and gross motor skills. Gross motor skills involve large muscle movements, which include muscle control, body coordination and locomotion. Fine motor skills include the small muscle movements, primarily related to hand use and perceptual motor coordination.

In the area of gross motor, he scored 9 months which is 1 month above his chronological age. Benji stands for 10 seconds while holding on to a solid object, moves from a lying position to a sitting position by himself and pulls up to a standing position without falling.

In the fine motor area, Benji scored at 5 months, 3 months below his chronological age. He can transfer objects from one hand to the other, picks up things in his fist as opposed to index finger and thumb, and he will reach for an object placed before him and touch it.

Communication
Communication domain covers both receptive and expressive language. Receptive language is the ability to respond and to understand spoken language. Expressive language is the ability to respond to a word by using words or gestures.

In the area of receptive language, Benji scored 7 months, 1 month below chronological age. Benji turns his head toward the source of sound outside his field of vision, responds to voice outside of his field of vision and responds to non-speech sound outside his field of vision. His emerging skills are responding to different tones of a person's voice and associating spoken words with familiar objects or actions.

In the expressive communication, he scored 8 months which is his chronological age. He produces one or more vowel sounds, vocalizes sounds to express feelings and produces one or more single syllable consonant-vowel sounds.

Cognitive
Cognitive domain tests skills related to perceptual discrimination, memory, reasoning, academic skills and conceptual development. Benji scored at the 8 month level right at his chronological age. He shows awareness of new situations, feels and explores objects and reaches around a barrier to get a toy.