Annual CHD check up!

Today I went to my cardiologist, Dr. Hermo at Children's Hearts in Nashville.  We got there a little early, but I didn't mind. I knew mom needed to allow time for traffic and everything since Nashville can be crazy at times.

My oldest sister came with this time, but she pretty much stayed quiet. I think she just wanted to get out of the house. And she sure did not want to get caught in a picture.

Anyhow, we ended up getting there about thirty minutes early which I guess is better than being late. That was fine with me, I brought my LEGO Ninjago: Character Encyclopedia with me plus there was the fish tank and a few toys there to play with. Which, as mom skillfully captured, I had to fix the blocks. Can you believe somebody had mixed the colors up? I of course had to put them where they belonged.

 Once we were taken back to the exam room we had to wait a few more minutes, but I was able to humor myself there too.

So, for review... At a week of age I had a subclavian flap repair for CoArctation of the Aorta and to take care of the patent ductus arteriosis. In addition to that my Aortic Valve is bicuspid with stenosis.

 There are a few things that Dr. Hermo does to make sure my heart is working well. She starts with a basic exam that involves listening to my heart and checking for my pulse in the extremities, that tickles sometimes. After that she checks my blood pressure, which was excellent (87/62). Then she uses the pulse oxymeter to measure the amount of oxygen in my blood and my heart rate which oxygen was 98% and pulse was 76, although I was wiggling my finger. I did not like the machine she used this time because it is the one that clips onto your finger and I thought it was going to pinch me.

After that, I went and got measured. I am 4ft 6in and 65lbs. Mom asked where I am hiding my weight.

Once that was done I had an EKG(?) where Dr. Hermo put 10 pads and wires on me and this machine printed out some lines. I did not like the way the pads felt. They were gooey and sticky, that made it hard to stay still for the machine to get the information it had to get.

After that I had the echocardiogram, which is an ultrasound of the heart. My aorta was checked to make sure everything looked good, which it looks beautiful! And the valve was checked to make sure there were no significant changes. Current diagnosis is mild stenosis with negligible change from last year. Treatment is to continue what we are doing and if any symptoms show up call. Other than that, we go back next year.

Praise God for another awesome year!

Echo Update

Cardiologist visit was uneventful. Praise the Lord.

Pulse-ox was 96% and Blood Pressure was 98.

Stats from right leg were 88 over 72.

Stats from right arm were 80 over 57.

This is without meds! The aorta looks great, no problems from the repair. The valve (aortic) is leaking but there has been little to no change since May.

Benji behaved wonderfully! He told Dr. Hermo all about his transformer Bumblebee. He stayed calm for the blood pressure and pulse ox. He was very curious about the echo but did as he was asked and laid still.

Benji has been okayed to do the Miracle Ball sports and T ball as long as the coaches understand he will need to rest more than normal and that heat will have a significant affect on him. (No problem there considering I am momma bear.)

OT went good. Robyn was impressed that he was willing to play in the shaving cream while "washing" the cars in the car wash. He was tired and distracted but it was expected some. She got him reined in and today was productive.

We have regressed heavily on potty training at home and out and about. He doesn't want to go. As I said a couple posts ago.. with family and friends, schedule changes and the Holidays... I don't think I will really push until January. I will be glad when the diaper chapter is over. He also is coughing this evening... hoping it's just drainage. Little guy hasn't ever really been sick.

Echo...ECho... Echo...

Okay... not funny. I know... It's still early to my brain.

We, Benji and I, are currently getting ready to go into Nashville.

Our first stop will be at Childrens Heart where we will see Dr. Hermo. This is Benji's six month echocardiogram. We got good news back in May, we are praying for even better news this go. He's been off of the propranolol since the May visit.

We are praying that Benji will be able to stay calm during the echo. With his Sensory Processing Disorder all the gel and the actual echo wand tickles him ALOT. It gets him worked up and he doesn't like to lay still for it.

The echo is at 10am.

After the echo we have Occupational Therapy at Bill Wilkerson. That appointment is at 1am. I am feeling sorry for Robyn. If Benji is predictable, he will be a handful for therapy.


Little man also has drainage and a cough. So... praying that clears up soon.

I will send an update as soon as I can!

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.