Saturday, October 15, 2022

My girls!

I mentioned that this is Hannah's senior year.  She got to paint her parking spot, and she did a fabulous job!  I helped her come up with the idea.  I was hoping she'd do something with some meaning.  When discussing this with her sister, we decided she is very much like the Queen of Hearts in Alice and Wonderland sometimes.  She hand drew this with chalk and then painted it for like five hours straight.  In fact, she squatted the whole time and couldn't feel her feet for more than a week.  She literally collapsed several times because she couldn't feel her feet.  So she learned a valuable lesson, and hopefully will take breaks next time.


This is a screenshot.  I still need to get a picture of her with her spot.

Hannah has also been running a little side business where she sells dog portraits that she draws.  One of my mom's friends ended up having her draw every dog she's ever had and hung them all up.  Here is the screenshot of her dog wall.  I am super proud of her!


Genevieve dressed up like one of her favorite teachers for "Dress like a Teacher Day" during Homecoming Spirit Week.  I snapped a picture right before she walked out the door in the morning.  I was seriously amazed at how much she nailed it though when I saw the school's Instagram post.  She straightened her hair and wore a different pair of glasses (not prescription) to complete the look.  The only thing she was missing was the Doc Martins.


Her teacher is in the middle of all the students that dressed up like her with the lanyard around her neck.  She complimented Genna on her outfit being so similar to her own.

 

Friday, October 14, 2022

Our Lifemark and Kirk Cameron

Exactly one year from our "Gotcha Day,"  the day we had Roman in our arms, I went to see the new adoption movie called Lifemark starring Kirk Cameron.  Brian was out of town so I took Isaac with me to see it to celebrate the day.  It was a really sweet movie, and I admit that I cried during most of it because it really hit home with me as we approached our official adoption day when we would finalize our adoption of Roman after more than a year of loving and caring for him as our very own.

One week later was our biannual benefit dinner for an organization that is dear to our heart, A Woman's Haven.  They provide help and services of all kinds for women with unplanned pregnancies to be able to choose life and love.  The speaker for this event was Kirk Cameron, and since we are VIPs and host a table every time they have an event, we got to meet him before the dinner for a photo and a quick meet and greet.  I was so excited to tell him that we were finalizing our adoption the very next day!  He has four adopted children and two biological as well.


Fast forward to the next day.  We kept the big kids home from school.  We were all in our living room with the laptop hooked up to the TV on a Zoom call with the court in Kansas.  It was a beautiful moment, and again I cried.  I cried the moment that the judge said the final words congratulating us as Roman's forever family!  It is such a relief to finally have this adoption decree and for Roman to have our name.  We love him so much and he has felt like ours really since very shortly after we got him.  What a precious gift we have been given!  He's already made us better people, each and every one of us.  

We at least got part of everyone in a selfie!


I think he likes us too!




Roman Gabriel Charles FORVER!

 He is our Lifemark.  He has indelibly marked our life.  And just like in the movie (based on a rtrue story) we thank Roman's birth parents for choosing life, choosing us, and making this amazingly cute, little guy.  He is not "less than" for having Down syndrome; he has something "extra" and it's not just a chromosome.  We adopted him on September 23rd, but I am posting this in October, which  is Down Syndrome Awareness Month.  So happy DS Awareness Month!

Thursday, October 13, 2022

Why back to the cardio-thoracic surgeon?

 Well, I mentioned before that Roman had a small bump on the bottom of his sternum.  In May the Cardiologist said it was probably fine and that it was most likely just a funny healing of the bone because a wire snapped in the hospital immediately after his open heart surgery.  He told me that if it doesn't bother him, it would be fine.  So, basically just watch it.

Over the summer it changed from a bump to being more of a pointy, bowing out of his sternum.It didn't bother him, but it was starting to worry me a bit.  After showing our dear friends (one's a doctor,) he said that we should get another x-ray because that is more than a bump.  I immediately called and scheduled a follow up with the surgeon.  

Within one week I was walking into the the hospital where Roman had his open heart surgery, almost eight months ago.  I started getting very shaky and anxious.  The whole place brought back all the memories and feelings of that two weeks we were in the hospital.  I chatted and joked with the nurses and clerks to get my mind off of it as we checked in for x-rays and then upstairs in the pediatric cardiac unit.   It helped a little and by the time the doctor walked in I was actually feeling better.  He was being very gentle with me which made me think this was not good news.  He explained first that the wire broke into two pieces. His body was rejecting the pieces as foreign objects and trying to push them out.  There is some inflammation in the area that is pooching out.  Then he told me that to fix it, it was just a small outpatient procedure to remove the wires, clean out the inflammation, and file down the bone a little.  He said many times how sorry he was, and that he has never seen a wire break in two before.  All I could think was, "Thank you, God, that they don't have to re-break the bone."  That was my fear.  I was imagining this wiggly little tornado that just learned to crawl having sternal precautions for eight weeks again.  


I had even had a nightmare that when the doctor lifted his shirt to look at his chest he said, "Oh no, this is not good.  He's retracting.  He's going into hear failure again."  So my subconscious thought this was going to be super bad news.  And it was only mildy bad news.  Right?  I didn't cry.  I just reassured the doctor that it was all fine and made plans to schedule wit his nurse this (if all goes as expected) day surgery in no particular rush because he said it wasn't urgent at all.  We could even wait until Christmas break.  We packed up the stroller and began the long walk back to our van in the parking garage.  


On this long walk, I was giving Roman and myself a good pep talk.  We can do this.  It sounds scary, but it will all be fine in the end; we'll barely remember the hardship.  It could have been much worse.  This is a quick surgery, like the ear tubes.  We can do this.  And then it started to break down into, But I don't want to have to do this.  I don't want to do this again.  Then there were some tears.  I didn't want to call anyone just yet, not even Brian.  I just needed time to process.  As we got to the roof of the parking garage, I had a missed call come through.  It was our adoption attorney.  I had been waiting to hear from him and so I stopped my dissolving pep talk and called him back.  He needed our available dates for the finalization court date.  That's super, happy news!  This sweet guy that I love and care for, fret over, and have sacrificed so much for is finally going to be one hundred percent ours and truly be our Roman Gabriel Charles.  God is so good.

Of course, this didn't make all things rainbows and roses, but it was a balm.  We set the surgery for November 4th, and we'll be updating his Caring Bridge Site about all this in a much more timely fashion than this poor, neglected, struggling blog.

Wednesday, October 12, 2022

Roman's One Year Well Check

 Roman's Stats

Weight: 17 lbs 11 oz (4th%ile)

Height: 28.25  in (2nd%ile)


Roman is doing remarkably well!  He's highly active and very verbal.  He is saying three words with meaning now which just blows me away.  His three words in order of learning them are "Mama," "Up," and "Hannah."  He has one tooth (bottom right incisor) and one on the way (bottom left incisor.)  He's Army crawling, getting in the bear pose (we call them his baby push ups,)  standing with balance help, sitting for a for fifteen to thirty seconds on his own (if distracted, he doesn't like it,) clapping, eating stage one baby foods(not quite a normal amount though,) starting to eat baby (Cheeto shaped) veggie puffs, starting to try to drink from a special straw cup, and generally being adorable and irresistible.  He is gaining weight and drinking his bottles great some weeks and not so great others.  His pediatrician was happy with his weight gain and has allowed us to reduce his fortification again to 22kcal now!  Since doing that he is drinking 6.5 oz bottles for his four awake feedings and then drinks a varied amount (but never the full 6.5oz) at his "dream feed" at 11 pm.  He is soaking his bibs again while drinking, possibly because it's a little thinner, but the difference is so small that I can't understand why this would cause this much spillage.  Anyway, he is struggling with constipation again despite all that we do to prevent it.  (It is since our last trip.)

He got his MMR vaccine and did not have a hard time which is wonderful news since the vaccines normally hit him hard.  I am spacing them out a bit.  He didn't grow in length as much as he did in weight.  His arms and legs are definitely short, even for a baby with Down syndrome.  He has upcoming appointments with Endocrinology, Ophthalmology, and Cardio-thoracic surgery (I'll explain further in the next post.)  Not on the books yet, but he also needs a swallow study to see if his reflux is still there and if he is aspirating (which I don't think he is.)  We had a light summer, doctor-wise, but we are hitting it hard in September with four doctor appointments in addition to his seven therapies.  His pediatrician mentioned adding on some therapies, and I tried to keep a straight face, because...when?  I also have two orthodontic appointments and two doctor appointments for other kids this month, aaaand we are finalizing the adoption this month on the feast of St. Padre Pio (Yay!) all before we head to the beach for our yearly vacation with family (not a month long like in the past.)  It's a lot, but I love it!  I love being busy and being a mother to all seven of these precious, individual souls.





I finished his Thor towel!  Can't wait to get a picture of all (young) the cousins with their superhero towels.  The big kids outgrew theirs and I just made them towels with names on them.


The boys are excellent at feeding him baby food.  It takes a lot of energy to convince him to take each bite, and they are full of energy!





Tuesday, October 11, 2022

The Fennec Fox Experience, A Very Late Birthday Gift

 I had the joy of taking Isaac and his buddy to the Animal World Snake Farm Zoo (I previously went with just the homeschooled boys in May) specifically to have an experience with his favorite animal, a fennec fox.  Genevieve babysat Roman for me.  It was a stress free day and we had a great time!

The moment we've all been waiting for!  Isaac got to hold the fennec fox, named Janet (my mom's name ironically.)  Janet was raised from birth to be tame and held throughout the day even though she is nocturnal and has to be woken up for these encounters.  Poor girl!  She has a buddy, named Jo, that she plays with all night long.

We all got a turn to pet Janet.

Janet was a timid little thing.  Look at those ears!

I fell in love with this cute little wart hog.  

Gibbons grooming each other.  They made they most insane noises when they swung across the top of the cage back and forth at top speed.  Apparently, they do it every day when the bison are getting fed.

These girls were fed with tongs on special blocks so they don't fight each other.


Hyena, we got to watch them be hand fed through the bars and hear them laugh.


Feisty goats, I told Isaac to show them who's boss.



Look at the micro mini cow!  She is a miniature cow with dwarfism.

A friendly Lemur

A very moody llama


Monday, October 10, 2022

The Nine Year Old Privilege: Holding a baby standing up

Judah's ninth birthday came upon us while we were visiting friends for a fortieth birthday party.  We ordered him an ice cream cake just like he wanted.  He got to choose dinner, and he chose a meatlover's pizza.  Judah, like Isaac, is sweet and easy to please.  





A fun trip to the park during our visit




The nine year old privileges involve a new book series that he can read, a special date with dad, and holding a baby while walking around.  The last couple boys really haven't had a baby around to carry, but Judah has Roman now and is so excited to carry him.  He is Genna's "mini me" and they are so much alike that I asked him if he could try to "beat" Genna by not dropping any of my babies.  Genna dropped Judah on his head when she was 8 or 9 from the couch.  She also fell hold Bobby and saved him, but broke her own arm in the process.  So we're hoping for Judah to have a better track record, but I have to admit he makes me nervous sometimes.




 I love this sweetheart!  He is my Bunny Twenty-one (This is from the book, The Country Bunny where her twenty-first bunny baby pulls out her chair for her at the table each day.) who makes my coffee in the morning and rubs my back when I am getting overwhelmed or sad.


  
Judah's done with his palatal expander, but now he has two front braces and a retainer expander.

Saturday, October 8, 2022

On the Move

 Roman has seven therapies a month.  Four of them are all about movement.  He's practicing sitting and working towards crawling.  The last time his physical therapist came before she had her baby and went on maternity leave, she told me he was so close to crawling.  He was getting up on all fours like a bear. I had my doubts that he'd be crawling soon because he has plateaued so many times.  But sure enough she was right!




Within a week he was Army crawling.  In fact, I gave the boys the task of catching his bear pose on video while I was putting away his clothes, and instead he crawled on video for the very first time!


He also got his first tooth on the same day!

Friday, October 7, 2022

One Year Old in the House

More pictures of our resident cutie on his special day!  I love this boy more each day!  Yes, he takes more work and time than the other babies did, he has to work harder for every milestone, and his adoption isn't even finalized yet.  However, none of this matters to me one bit when I cuddle him up for bedtime snuggles and stories.  I look at him and wonder how I can possibly love him so much.  He is such a treasure that has already blessed our family beyond words.  I can only imagine how man more blessings are to come in the days and years ahead.



My green twins!




Sleeping with his hedgehog like always

A perfect background for a photo