Christmas Pic pt #2

I got the Christmas outfit on him! I did have to cheat and put a Cars tee under the shirt... but we got the outfit on him.

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Christmas Pics pt #1

pics from early Christmas day... 'Hanger' the build a bear bunny and Benji's ball pit.

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Christmas Joy

Benji is enjoying his brand new ball pit. It was an unexpected gift we got on our trip into Opry Mills yesterday. It was on sale and we couldn't resist! Playing in the balls help with his sensory stuff and it keeps him busy for a little while. Plus we had plenty of pit balls from the old pit that he used to have.

Christmas hasn't officially started for us yet.. we don't open gifts until the girls are here... so I am sure there will be more pictures.

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Set Backs and Improvements

Benji has had a hard couple of days lately. This past week was a bit overwhelming for him with Christmas parties and decorating and such. He never responds too well to things being different. Wednesday one of his sisters stayed home from school and then another came home early while he was at school. He got very cranky with that.

Off and on the last two weeks Benji has had minor congestion and a dry cough. Thursday it got to be a wet cough and his sugar took a dip without wanting to stay back up. The lowest it got was 73... but considering below 80 is hypoglycemic and he has ketotic hypoglycemia... I was the concerned mom. Made sure to keep his food and beverage intake written down and his outputs too. This is when we realized it is quite possibly a tummy bug with loose BMs. Called the dr and the nurse said that he needed to come in Friday, but if the sugar went below 60 to take him directly to the ER. Friday his sugar was fine but still having the loose stool. Dr said to make sure to feed him complex carbs and that he didn't feel there was really anything we needed to do right now.

Yesterday was bad... the cough got very moist and congested sounding. (Benji can't take benedryl because of his heart stuff) His sugar levels would dip but for the most part we were able to keep them between 90-120.

Last night was awful. He made Micah's croupy cough sound like nothing. Put some vapor rub on him and the texture and smell bothered him until he passed out asleep. (He was so tired that the relief it gave was better than complaining about the senses going crazy. Poor guy.)

Today we are monitoring the cough and his sugar level... he's staying between 75-91 even after eating. He has diarrhea, thankfully we have pedialyte pops. Stayed home from church so I can keep a closer eye on him.

In staying home Benji has been playing Sonic on the old Genesis... he loves it. He's doing good with the hand eye coordination. Trying to get him away from the video games I pulled out his Bilbo for him. (It's a great toy... there are so many different uses) He sits in it and spins like nobody's business. While this typically should be a surprise... Benji has hypotonia... his core muscles are weak, it's the reason he goes to physical therapy. He spun! He did it!

Saving Little Hearts Christmas Party

Benji was so excited to see Ronnie the Raccoon at the Saving Little Hearts Christmas Party he gave Santa the boot... lol

He had so much fun! We made a snowman picture frame and a miniature Christmas Tree. (I did more of it then he did, but we still had fun.) Benji's aversion to sticky stuff came out, he didn't want to touch the glue but had no problem squeezing it from the bottle.

When it got to picture taking time Santa was sitting where Ronnie is in the above pic, Benji was on the opposite side of the couch. LOL... He kept looking at Ronnie and going on about him so Santa got up and Ronnie sat down. As you can see, Benji has NO aversion to Ronnie the Raccoon. Plus we got a replacement stuffed Ronnie for his other one because it apparently got a little hole in it while at school for the bear hunt.

Jingle Benji

Jingle Bells Benji style.... so cute! Benji was in the Jingle Bell spirit with putting up decorations outside and then finding the door bells. Of course, Bubba couldn't resist getting involved.

PT was good today...

I brought up to Sarah about Benji being very floppy and about Robyn mentioning Monday that his core muscles were weak. So we got core exercises going and she has shown me a few to do at home.

Sit ups on the exercise ball. We use a wooden puzzle and put the pieces on the floor behind him so he has to stretch backwards across the ball and get one piece at a time. He then sits up and puts the piece in the puzzle.

Leg lifts. This one we don't have nailed down yet, he's to lift a small ball between his feet straight up and back to his hands. (Not sure I am describing it correctly) I think I will need dad or one of the older girls to help me here. At least we have plenty of ball pit balls that are the perfect size for this one.

Swing Time. (We finally got the swing back up!) Aside from just the vestibular input he gets from swinging... we can use his swing to help strengthen those core muscles too. I need to get a rope or something that Benji can hold onto to pull himself to me while on his tummy in the swing. (we have a fabric sling swing)

There was another one, but I can't remember what it was. Anyhow... his arms are strong but his shoulders are not as strong. His legs are strong but his trunk is weak which causes his legs to fatigue. Plus with his feet... low arches and pronation... little man will overcome this.

I also had Sarah look at Benji's knee where he fell on Wednesday afternoon. She said that it appears to be a bone bruise but since he can put full weight on it and run and jump he should be fine. The swelling went away Wednesday night and she said to keep an eye on it since it was a little tender to the touch. If it swells back up then he will need an x-ray.

Bear Hunt

So... last week at school Benji and his friends did a bear hunt. They also learned about bear. (Brown Bear, Bear Hunt, etc.)

We got a couple of the crafts they did from it today. I think Benji did a great job even though last Thursday was hard for him. (We think the bear hunt scared him or the anticipation got him worked up. He had a hard time listening Thursday.)

So... one bear was covered in glue and he put oatmeal on it. It's cute!

The other bear is a small paper plate with ripped construction paper and all glued on. It looks like he did a good job there.

This is such an improvement from just six months ago!

Benji still doesn't like to get sticky or to get paint or glue on his hands, but he sees that if he tolerates it long enough he can make the craft and enjoy it. Then wash hands. I am sorta glad he insists on being clean. His brothers could learn from that. LOL...

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!

Bear Hunt

So, remember yesterday how I had said they are doing bears in school with Benji? And he took his Raccoon?

Seems somebody has developed fear all of a sudden. He wouldn't go tot he bathroom last night because the bear would get him. He refused to sleep in his bed because the bear would get him.

This wasn't just a tantrum, he cried, no sobbed for 20 minutes outside my bedroom door. Britt couldn't even calm him down. *sigh* So he slept with me and Jeff. I never sleep well when he is with us. However, Benji is still asleep right now. He gets to sleep in a bit since Nana is going to stay with him when I go to MOPs.

The boy isn't afraid to jump off of things no matter how high. He's not afraid of climbing, he loves swinging high to the sky, but he is afraid of bears that don't exist. I think his imagination is working a touch too much.

Benji and Ronnie

Benji is a bit tired after preschool today. He's been off since his flu shot at the end of October. Mostly lack of consistency... suppose 'normal' won't be back until after the holidays. *sigh*

On October 28th we got the flu shot.

On November 3rd we cut back occupational therapy to biweekly.

On the 9th we had the 7yo's birthday party. It was just family, but still... change from the norm

November 18th we started taking a friend to school with us.

The 21st and 22nd we had the 14yo's sleepover and that put a monkey wrench in consistency too. Extra people always makes it hard.

Then there was Thanksgiving, and family, and food and school only one day that week. Physical Therapy was canceled due to the holiday and then OT got moved to Dec 8th.

So... normally on Monday's when we have OT we go into Nashville up to the Bill Wilkerson Center at Vanderbilt for the occupational therapy. This week we went in to Dickson for his Physical Therapy. He wouldn't or couldn't focus on what was needed to be done. Very difficult guy. To add to it, he has quit using the potty again.

He does good at school, it's just once he gets home or if we are out and about, he has alot of accidents now.

Back to the picture... This week they are themed on bears. Remarkably, Benji doesn't have any stuffed bears. (really have no clue how that has happened) So, I explained to him that he needed to bring a stuffed toy to school and with alot of finesse on my part got him to taking Ronnie the Raccoon. This morning he was very worried that he would get in trouble for taking a toy to school. I explained the note his teacher sent and showed it to him and read it to him. Then he was afraid he would leave it.

So, dropped Benji and his friend off at school this morning, explained to the teacher that he thought he was going to be in trouble and she told him that this time they needed to bring it.

When I picked them up this afternoon... Benji was terribly upset that he left his raccoon at school and that it would be forever lost. (Ronnie was in his backpack)

So.. that's why Ronnie made today's picture.

Ronnie that Raccoon is a special stuffed animal that Benji got when he was in the hospital as a baby having heart surgery. Saving Little Hearts makes care packages for kids having heart surgery and Benji received one. I encourage you if you are looking for a charity to give to, to donate to them. They have monthly meetings and connect families together. Plus they do the care packages.

On to the next day in our crazy life... here's to praying that the little guy gets potty trained sooner than later. And that he settles out and we have a good December.

OH!! I forgot to tell you just incase I don't update before then. Benji goes for his echo on December 8th. When we went in May I had prayed that the Dr. would be shocked. His stenosis numbers went from 68 to 22 (the lower the better), the coarctation repair is beautiful. Our prayer now is that his aortic valve will be completely healed and no longer bicuspid. (suppose to have 3 flaps instead of 2)