Datsun 280zx

We are now the proud owners of a "project car" that will hopefully at least get Isaac to and from work here in about 6 months (unless we can find anyone around here that hires a 15 1/2 year old.)  Brian talked me into buying this car made in 1983 because he wanted to teach Isaac to work on cars and this aged car will be easier to fix since it isn't computer based.  Also the parts aren't too expensive.  So, first on the docket is to fix the seat belts so it is safe to drive, and there a couple other issues to make it more reliable.  If this all pans out, he will be buying this car from us at some point.

Isaac has been a rock star driving the van around for us during the day since he got his permit in September.  He's not ventured on the highway yet, but he is probably ready now.  I am proud to say it is a rare occurrence that he makes me nervous which is so different than when the girls were learning.  They also didn't learn on the big 12 passenger van.  This means he gets a lot more practice since that is primarily what we drive.

 

Roman's Heartiversary on January 21st!

 

Today is Roman's heartiversery! It's been 2 years since he had his heart surgery to correct his complete AV canal defect. Roman would not be alive if his surgeons had not been able to perform this surgery for him. We thank God for his surgeons and for the medical advances to make his life possible. He is doing great! His cardiologist said his heart looks good and cleared him to be seen in one year for his next checkup. Although he has a couple sutures trying to work their way out from his chest, it is otherwise closed, uninfected, and we've been told not to worry about them. 😊

He's had another rough autumn/winter so far with many illnesses. He had COVID and RSV again, as well as Strep, a couple ear infections, and a sinus infection. He did get his second set of ear tubes on December 12th, and that has been uncomplicated which is always our hope.  

We are, as always, so grateful for all the prayers 🙏. He's truly been such a blessing to each of his brothers and sisters and to Brian and I. Here's to another year with this little man with a big heart. 

His face has had this rash for a while due to all the slobber and snot that are constantly on his face.  We are alternating between vaseline and aquafor right now which has worked in the past, but not so well right these days.

Having his formula with Daddy and Luna while watching some football.  He loves football and basketball so far.

This morning, the day after his heartiversary, he had speech therapy.  I showed her his list of words that he can say, he demonstrated some of them during therapy, and she said that she has never had any child with Down syndrome with this many words.  She said he is really bright.  That just made my day!

Another 4th Generation Aggie!

 Genevieve applied to three colleges and got into all three before Christmas. She has decided that she will be going to A&M where her sister is. She, like Hannah, will be a 4th generation Aggie. My grandfather, my dad and all his brothers, my mom, and Brian and I all went to Texas A&M.

People keep asking me if she's excited, and I realized I really wasn't actually that sure. I asked her and she said that yes she is happy that she got in and somewhat excited. However, she said that she is enjoying her senior year so much she just wants to live in the moment not really think about next year.  She and Hannah are so very opposite. Hannah couldn't wait to get through her senior year and go to college.  

With college applications and her play behind her, Genevieve's focus right now is on her senior thesis which is on the feminine genius using the books, the Odyssey, The Lion the Witch and the Wardrobe, and the play Antigone for her defense. She is also in the middle of basketball season where she is the starting center Post and usually starts the game with the ball tip.  She is also working, has a very full social life, and a constant stream of babysitting requests.  This makes it so that we rarely see her, and she doesn't even make it home for dinner most nights. When she is home with free time she is painting, drinking hot tea, or snuggling with Roman.  She loves to take Roman on walks when the weather is not quite so bitterly cold.  I often will go with her if I have time and we have our very best chats during these walks.  I am working on her senior photo board and gathering pictures for her senior banquet. Once we pick a date for her graduation party her announcements/invitations will get printed.

The aforementioned play that she was in was a one act Little Women in which she played Meg, the oldest sister.  She killed it and we were so very proud of her!  She particularly shined during the engagement scene in which she gets very flustered and played it to a tee.  That scene filled the audience with giggles.

In costume

Does he talk?

At his cousin's house, he picked this up immediately.

His hair got so long in the last month or two.

Watching his brothers jump on the trampoline.  (Before the cold snap, obviously!)

The boys were taking a selfie.

(After his haircut) He was saying "Amen" here after prayers for my cousin.

People often ask me if Roman talks and I've always told them no, but he does say some words.  Here is a list of his current words as far as I have kept track of.

Mama (at 6 months old in hospital after heart surgery.  I have lots of witnesses 😉)

Dada

Hannah

Luna* with sign for dog

Genna

Judah

Isaac

Night night

Yay*

Bye (usually says with d sound)

Bubba (what he calls his pacifier) with sign

Bubbles with sign

Pop

Help with sign*

Up with sign*

Down (usually just the d sound) with sign*

On 

Off

Light with sign

Shirt

Shoes with sign

Shhh with sign

Amen with folded hands

Book with sign*

Please with sign

Cheese with sign and a smile 😉

Juice with sign

Bed with sign

All Done with sign

In case you lost count that is a whopping 28 words, and I'm probably forgetting some.  Unfortunately, many of them are difficult to understand if you're not in his daily life.  Also some of these words he will repeat for us but will not use spontaneously.  I put a star next to the ones he consistently uses spontaneously, on his own without prompting.  I often have to tell him to "turn on his voice" if he is signing something he knows how to say.  That is a phrase the speech therapist uses.  He has more than double this amount of words in signs.  He picks up signs crazy fast, but because he lacks the dexterity many of them look similar and we have to use context to distinguish them.

Favorite book: Chicka Chicka Boom Boom

Newest accomplishment: drinking from a hard twisty straw, the twisty part makes it harder to suck.  So his cheek muscles have to work harder.

Biggest Struggle: Eating, specifically, any actual solids even dissolvables if not mixed with smooth baby food

Health:  currently on antibiotics for a suspected sinus infection on the heels of the antibiotics for strep throat.

Throwback Post #3: 191 Days (December 5th, 2022-June 18th, 2023)

This is just a snapshot of some different aspects of our life during Roman's 191 days with an open chest wound last year.

Where it all started...this was before the first minor day surgery to remove the broken sternal wires.

Waiting for Daddy to pick us up at the front of the hospital afterwards.

Unfortunately, four days later, on December 9th, he had a half a grapefruit sized swelling on his chest, and he had to have an emergency surgery to drain, clean it out, and place a wound vac on.  That began a longer journey than anyone expected to getting a closed chest on June 18th.

During these 191 days, he was hospitalized 5 different times and had 5 more surgeries in addition to the first two mentioned above.  There were two more serious infections, one PICC line, and countless ER visits, wound vac changes, wound checks, bedside debridements, IV's, MRI's, and tears shed.  It was rough for sure.  I had to have a bag packed every time I drove to get a wound check in case they admitted us which was two or three times a week for the entire six months.

The first wound vac (in my maroon fanny pack to keep him from pushing buttons) that he got was small enough to be drug around behind him and not pull on the suction.  However, it also had a super short battery life and had to be plugged in a lot more than just at naps and bedtimes.

Lots of swing time was one way we kept him happy and busy.

Learning to use his Honey Bear straw cup.  This was his first time holding it on his own too.

I was stuffing his clothes with a blanket for a long time because I thought it would make him more comfortable, but, as his CT surgeon joked, it was more for me than for him.

Defying all odds and learning to stand even with a wound vac!

We got a 5 foot by 5 foot playpen for the living room when we realized the wound vac was here to stay for a good while.  He needed a place to be able to play and not go further than his tube, AKA "leash," would allow.  It turned out to be a great investment, and, now a year later, even without a wound vac restricting him he is still happy to play in it.  Sometimes I'd say he even feels safer and happier within the boundaries of this comforting familiar area.

This is how he slept with the wound vac in the black bag at the bottom "hidden" behind his stuffed animals with the cord strung through the bottom corner under the mattress that plugged him in to the wall to recharge the batteries while he slept.  The cord did get wrapped around him a couple of times, once around his neck in the middle of the night.  Thank God that he started moaning and crying out because I was sleeping right next to him and was able to unwrap it.

The great thing about this play pen is that it rests on the ground and anyone could get in with him to play if he got bored...like in this picture.  The kids were constantly hopping in and out to entertain him.  His therapists got in sometimes too.

Here's one of our creative ways that we used to give him time out of the playpen and allowed some exploration.  We tied the wound vac into the wagon.  We still had to watch carefully to make sure it didn't get stuck on anything.  If he pulled too hard on it, it could loose suction and that would mean another 30 minute drive to the hospital ER for the doctors to replace it.  We did have to make that trip about a half a dozen times over the 191 days that he had the open wound.  One time it lost suction when we were out of town, and we made the decision that we'd seen it don enough times that Brian and I could do it ourselves.  We did it!

Fell asleep to "Sweet Child of Mine" while awaiting anesthesia.

Practicing eating food at the hospital which for the most part was majorly put on the back burner during this nightmare.

Brian and I took turns staying overnight with him when he was in the hospital.

 But on June 18th, his wound was officially closed and he took his first unassisted steps!  Praise God!  No one knows why this happened, and we just have o trust in Jesus on that one.  But, oh, how grateful we are that it is finally done.  As I write this in January of 2024, he does have a couple sutures trying to come out around his scar, but so far none are inflamed or any cause for concern.  Although we will continue to pray for his health daily.  He currently is sick again; he started showing signs of illness within days of finishing his antibiotics for the strep.  Oh, this boy!