New Year, New Checkup, New Results

Hi guys, I'm Benji's mom. Sharing my thoughts right now. Momma's have to process too.

Yesterday we went to the annual cardiologist visit. Benji was very tired because he didn't sleep the night before. Schedule changes cause issues with sleep schedules and we just went back to school on Wednesday after 2+ weeks for winter break.

The last month or so, there has been a feeling. I can't explain it. I just have had a feeling that change was coming and it is/was centered around Benj.

I need to say, I fully appreciate medical personnel, please don't think I don't. After I woke Benj up from where he crashed in the waiting room... the nurse took us back and proceeded to get his vitals. (Standard procedure.) Benj weighed 133.4lbs and is 65.5". (Major growth spurt.) His oxygen levels were at 99%. Blood Pressure in his right arm was 95/70. (Note he was resting, had been asleep.) Everything looked good; until the blood pressure in his right leg was read. It came back 111/75. Not a major difference, but I realized there was a problem when the nurse came back to check it again. The second time his leg was 126/103.

My mother's gut twisted. I knew something was going on. I started praying. Praying to know what questions to ask. Praying to be able to maintain composure no matter what news we were given. Praying to be Benji's rock if needed.

The doctor came in and she started reviewing his medical history. Asked a few questions about anything being different. I brought up his fatigue and headaches. She said she was pretty sure that would be his ongoing sleep issues. (Which the child stays up all night unless we are able to wear him out.) She noted that at birth the only procedures done was the repair to the CoA and the PDA, there was not a cath procedure. That mother's gut twisted a little bit more.

First step, the EKG. Benj laid down on the table and was asleep before he was completely hooked up. As he lay there lightly snoring and still, it was a moment of peace. It came out good. Rhythms are healthy.

Next, the ECHO. His aorta is nice and healthy. The repair is maintained. (Subclavian flap repair at one week of age.) His bicuspid aortic valve has moved into the mild stage where it was slight. The thickening of the left ventricle is concerning. There is a significant change, and our cardiologist is conferring with the surgeon as to whether we do a heart cath now or wait.

All of this can be overwhelming. For almost 12 years while Benj's heart has been monitored, it was stable and we had convinced ourselves that the big hurdle was done. We were fooling ourselves. Benj will always need a cardiologist and always keep an active role in maintaining health. As I research his condition (originally CoA, PDA, BAV with stenosis) I am seeing that this will be a lifelong medical concern.

I know what our journey is taking us to is a walk in the park for some of those in the CHD community and I will not take away from that. Yet, this is new and undiscovered for us.

• How do you talk to your 12-year-old child that has Aspergers about what is coming?
• How do you prepare siblings for the changes that will be coming?
• How do you keep a level head? (hello?!? This is my baby we are talking about.)

I'm trusting in God, I know He will bring us through. He always does. He is always faithful. I ask that you pray with us for God's favor and provision.

~ Benji's Mom

Here We Go

I'm not happy tonight. My sister went to her dad's again. I don't like it when she goes, and she was just gone for a WHOLE WEEK PLUS.

I didn't even get to go swimming today. Mom said she was afraid that I would get too hot. She was worried because she could see the veins in my face around my eyes. Not sure what that means. It doesn't really matter because it went away.

Me and my Bubba played Nintendo DS most of the afternoon. I was easily upset because I knew about my sister leaving. (I have two others but there is just something about G3) I didn't understand that it would just be for the night and she will be back tomorrow.

I did get to go see my Nana! and Papa! We played outside on the swingset and then inside with wooden blocks and Hot Wheels. Bubba made a race track that we raced the cars on and B1 raced the cars with us.

I can't wait until tomorrow, it's Father's Day. So I get to wish Daddy a Happy Father's Day!

Ever changing...

Benji has had a hard time the last two months. Just when he got used to the schedule of himself going to school, mom started college. To help us, mom and dad, to handle it we kept chanting it takes 2 weeks for adjustment to change. Just 2 weeks!

Well... It has been 3 weeks.

At school Benji is doing well. 95% of his days are good. He is learning how to be a great friend and he is learning pre-kindergarten skills too. Unfortunately, there are those occasional "stubborn" days. These days are unique because he might have a bad moment and then recover, only for when it's pick up time and he is walking to the truck he starts crying because he didn't get a "treat". But again, we talk about it and he recovers. Most of the time.

At home... things are different. Benji has been used to mom being there 24 hours a day 7 days a week with an occasional visit from Nana to watch him. With mom being at school three days a week, this has changed. Benji doesn't know how to handle it. We have made sure to spend quality time with him (and the sibs). He is still having "emotional" episodes. At first glance these tantrums, or mini-meltdowns look to be just a tantrum. The difference is that once he gets it out there is only one person he wants and he wants to be cuddled and loved on.

The biggest concern with this is that one minute everything is fine and then it takes only one little thing to set him off. His tolerance has dropped, I don't dare take him to the store right now. We can pick out a cartoon to watch, get not even 5 minutes into and he start crying because he wanted to watch something else, even though he picked it out. Frustration is building within him it looks like.

We are praying we get into a groove again. Even if there are different behaviors, it will be good to have things consistent.

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)

Thanksgiving Recovery

Somebody is wiped out. Seems all the food and all the company was a bit much for the little guy.

Thanksgiving Treats

Enjoying homemade icing

Sunday Night at the Movies

Not particularly a clear picture... LOL...

Benji and the rest of his family went to the local drive in to see Alvin and The Chipmunks. It was Customer Appreciation weekend so it was free. That is always a plus with our family. After playing in the field below the screen before it got dark Benji was ready to settle down back in the Expedition. This picture is him sitting in the floor board leaning against the seat with his "silky" as a cape and his sun glasses and hat on.

Benji loved the movie, it was funny. Of course he loves music, so why wouldn't he you know?

Rompin' Stompin' Reading Roundup

So... today was a busy day. This morning we went to the library and signed everybody up for the summer reading program.
Benji got to pick out 5 books for us to read to him. He really enjoyed the kids area alot. There was a train table similar to his wooden Thomas trains and then there were computers.

Both Micah and Benji were very interested in the computers that were there. Benji was almost too excited...... LOL Micah played the games a little bit, Benji just wanted to hit on the keyboard.

So... we do plan on visiting the library at least weekly. The boys were also excited that they got library cards with their names on them. =]

Books that Benji(28 months) Checked out:
Let's Look at Mouths by Simona Sideri
Colors and Shapes Everywhere (Caillou, Concept Book)
Like a Windy Day by Frank Asch & Devin Asch
Little Yau: A Fuzzhead Tale by Janell Cannon
Pinduli by Janell Cannon


Books that Micah(46 months) Checked Out:
Scoop Saves the Day by Diane Redmond
Space Case by Kim Yaged
The BIRD Alphabet Book by Jerry Pallotta
Transformers Energon: Terrorcon Attack by Andrew Donkin
Transformers Energon: Megatron Returns by Andrew Donkin

Boredom strikes....

I'm so bored..... sitting in the parking lot waiting on the kiddos. Benji's evaluation went well... He is 28 months and his speech is 14-16 months. They are recommending 2-3 days of speech therapy a week for an hour at a time.
And they speech pathologist also suggested based on the behaviors he presented that he has a sensory integration thing going on and recommends Occupational Therapy eval. I'm gonna be eval'ed out by August... At least then I will get a little break thanks to school starting.
So on to enjoyment.... once I pick up the kiddos I get an extra one and she will go home around 2 or 3. Then tonight is softball at 6.

ending with a cute pic of my cutie.... taken when we went to Michael's Saturday. It's Benji.

Spring Fling

the kiddos had lots of fun today at the spring fling.....my feet hurt.

spring fling pt #2

and to and.. the girls on the sizzler.... they had fun... I'm glad we went.

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.