Little Man

Benji is doing wonderfully! He is talking some, he has a few words and of course his favorite is no. He says it like he's singing it.. Noooo- noooo. He gets much more determined too. This morning when he got up he was practically climbing out of the crib. It was cute. When I got him out I put him on the floor and he grabbed his sipping cup and demanded "dink".

Other words.. Ma, mom, bub(this is for Micah), eat, kit (for kitty), daddddd(he draws it out that far), bye, go

He gets fitted for his braces November 16th at Nashville Orthotics. We should have them by Christmas. Then he will be getting new shoes too. He will have a sweet Christmas, lol... new shoes, presents... possibly a play set outside.

Now we just got to curb his climbing.

18 month Check Up

Well, Benji went for his check up this past WEdnesday. Everything looks good. He's 26 pounds and 33 inches long. Maintaining in the 80-85 percentile. LOL We knew he wouldn't be as big as Micah, but he ain't grown yet.
We saw Dr. Seethaler and I still don't know what to think about him. I know his intentions are well. Just a touch on the concerned side as to whether he is looking out for the best interest of the patient or the insurance. Why do I say this?
Last week , Benji's PT sent a referral to the pediatrics office for his supports. (He needs them because his ankles are not developing correctly.) Dr. Seethaler said he filled it out and sent it in to the Orthotics place. But then he wanted to see Benji walk. Wouldn't you know it, that little boy walked nearly perfect. The pronation and flat foot was there but Benji was walking normal. Don't get me wrong, I would love it if my baby didn't need the orthotics, but to have the problem and all of a sudden it go away? I know miracles still happen, but this is one I didn't pray for. And since he has been dragging his toes and the ankles are pronating.
Anyhow, it should take 30-45 days to get the insurance and everything straightened out and him be fitted. Once he is fitted it takes a little bit to get the supports.
Other than that, things look good. And he loves the new house.

P.T. came to visit

Benji had a physical therapist come and evaluate him today. It was Susan, she came out with Deanna to assess his feet/legs. Last time she came it was more for eating than for his walking because he wasn't walking yet. Which his eating is doing great.

After playing with Benji and getting him to do specific things, she has decided that he might benefit from orthodotics (sp?). It will not be a guaranteed fix, but it is worth a try to see if the pronation will correct. He will still be flat footed.

The orthodotic will be the DAFO 5.

She left it up to me as to whether or not to try the shoe insert. I said yes, because if there is a chance to fix the problem now I would instead of facing foot surgery later on in life.

Benji's growing like a weed!

I apologize for taking forever to update. The young Benjamin is really growing like a weed. In the last 2 months he has grown at least 2 inches and has finally started walking in the last two weeks. We can't get the little guy to sit still. He is very determines to be independent regardless if he is wore out.

Today we took all three boys to McDonald's for lunch and then let them play in the tumble tubes. Benji was a bit nervous at first, especially with the slide. But he finally got the hang of it. Then we had a really hard time keeping him out. We were grateful it was just the boys there instead of other kids too.

So, aside from just a couple of delays, Benji is doing great! He has some weakness in his right leg and he has sensitivity issues with his hands and then also oral sensitivity. He is doing really good and we have come a long way! Benji goes for an Echo next Tuesday and I will update on that then.

OT therapy 04/19/06

Today Benji and his therapist, Ms Deanna started the session with reading a book, It was one of those Thomas the Tank listen and look books. He sat on the couch with her and was very attentive. He would open the flaps mostly with his index finger while they were reading.

While Deanna was holding a pop up toy, Benji stood up for a long time. He was having a lot of fun making the animals go bye bye. Then also of course bringing them back by pushing the buttons.

While Benji only took 2 or 3 steps in succession for Ms Deanna, he normally will take up to 5 or 6 before dropping to the ground on all 4s.

Toady he did not like Deanna touching his hands or feet. He kept pulling away. This is typical, Benji don't like anybody to hold his hands or mess with his toes.
He wasn't entirely interested with the toys Deanna brought, he played with them for a little while but then went to the Easter eggs and started playing with them.

Benji is now drinking Sweet Acidophilus milk, he drinks 3 or 4 cups of milk a day. He still gets a little gassy but he is not throwing up like he was. He is still being picky about eating. He will let Nana feed him pudding or applesauce, but other than that he wants to feed himself. He eats cereal bars, cheerios, life cereal, graham cracker sticks, veggie crackers, chicken strips/nuggets, bananas, whales, wagon wheels and puffs.

Claiming Promises!

I am not sure if I ever updated about when the physical therapist came out to evaluate Benji's eating or not. I will just quickly go over it.

Benji has what appears to be a sensitive mouth. He wants to chew but has some difficulty. He also is wanting to feed himself but gets tired easily, that is mostly from his upper body strength. Benji has low muscle tone and it affects multiple areas. The other thing the pt noticed was that Benji is flat footed and bow legged. He has hyper reflex in his feet also.

Since the assessment, Benji is eating more table foods, he can eat chicken if it's broke up into bite sized pieces. He can eat cheerios, honey comb, carrots, green beans, eggs, crackers, bananas(broke up) and I am sure there is more.

Benji has been standing and cruising around the furniture for a couple months now. It started around Christmas and he is doing good. He's just afraid to let go. From what the pt said, it's part of the hyper reflex in his right foot. Me and Benji's regular therapist find this interesting because his right leg has always seemed weaker through the last year.

Anyhow, I shared all this to get to a promise. My mother came over today and was just so excited, she had been doing her Bible Study this morning and was reading about the crippled man that Peter healed.

Taking him by the right hand, he helped him up, and instantly the man's feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple court, walking and jumping, and praising God. Acts 3:7-8

I so claim this for Benji! God will strengthen the muscles and joints in Benji's feet and ankles and he will be healed.

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

What it means to be the parent of a heart child

February 14th, 2006

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 be 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 measurements 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.