Friday Photo Flashback

Three years ago today, at 7:07pm, Sam and I welcomed our son, Andrew, into the world.

There was plenty of excitement when he was born, that’s for sure. It was like a whirlwind. Three years later, and that whirlwind has yet to slow down!

Right from the get go, he’s kept up on our toes with plenty of medical things. His head was misshapen early on and one of the first things he had to get was a helmet.

Then there was laryngomalacia and surgeries to correct it. A laryngeal cleft that needed a surgical fix.

Ankle braces, followed by up to the knee braces, and in a month or so another set of ankle braces.

Not to mention 5 sleep studies, CPAP, and many genetic tests. And let’s not forget Speech Therapy, Occupational Therapy, and Physical Therapy.

Andrew, you kept your mommy and me very busy and, at times, very worried. We wondered if you would ever speak, but you certainly have mastered that! You are always talking now!

And your energy! Wow, if I could bottle come of that up! You are forever on the go. You never seem to stop running. You were born to play soccer (or any sport that lets you run around like crazy!).

When you are in a good mood, your laughter is contagious. You can be so very silly. When you wrestle, you are unstoppable (and often leave dad in tears because of a well placed kick or hit)! When you are in a bad mood, it ain’t pretty. You certainly remind me of my younger self. Of all of my four children, your temper tantrums top them all! The way you throw things may very well lead to a career in baseball or football.

You are unique, my son. I love you, always! You are a very special boy. You are a precious gift from God. I know that you will go on to do amazing things. Mommy and I cannot wait to be there with you and cheer for you along the way.

Happy Third Birthday, Bubby! Get ready to celebrate!!

I Love You,

Daddy

Post Surgery Update

I apologize for not posting a dedicated blog to an update on my son. Many blogger friends have reached out and asked how he is doing after surgery a week or so ago.

We are blessed that he didn’t need to be in surgery very long. They had booked the operating room for 4 hours, due to the “possibility” of other surgeries, but he did not need them. This was good news mostly, but there are now other questions. From my wife’s social media post:

Surgery went amazing. You would never know this kid had anything done. He bounced back fairly fast and is eating and drinking like a champ now. But surgery left a TON of questions and opened up new concerns. Andrew has severe sleep apnea as well as a speech delay, which we have always blamed on the laryngeal cleft and his Laryngomalacia. Both of which are still there, but surgery revealed they are not the cause of the obstruction like we were thinking. We have an appointment at the end of September with neurology to start looking at different things.

Some of the stuff we are witnessing is really leaving us scratching our heads. In speaking to the neurologist, some speech delay or speech regression could be neurological in nature. There is also some concern about muscle tone loss in some areas. We’re working with PT on that.

He’s been a toe-walker for a very long time and that can cause future problems. So this week, he received his braces. Both feet go in them and he needs oversized shoes so the braces fit in them. He wears them off and on for a couple hours and as the days progress, he’ll eventually be wearing them all day. This will help him stop toe walking and with those lower calf muscles.

He continues to have non stop energy and leaves mom and dad exhausted at the end of each day. He has come up with creative ways to climb up to counter tops, turn on and off lights, and destroy anything in his path. He is our little firecracker!

We will continue with his speech therapy and physical therapy and hopefully he’ll keep making progress. We are praying that the neurologist will provide further answers.

Thanks for keeping him in your thoughts and for sending positive messages our way.

Weekend Review

It’s Monday and there is finally a bit of normalcy back in our life. It was a crazy weekend for us.

Thursday, Andrew had his surgery. It went better than expected and we were grateful that many of the “possible” surgeries were not needed. This time the recovery went a bit better than the last time. When he woke up from his last surgery he had what they called post op “delirium” and he began pulling the IV out and was just a bear! This time, they gave him something that let him sleep a bit more and he woke up much more calm.

On Friday we were home. He seemed to be doing well. He was eating a lot of soft foods and popsicles. He seemed a bit more like himself, but we knew he wasn’t 100%. On Saturday, we had a scare as he just didn’t want to eat or drink. We even took him out for ice cream in hopes that would work. Naturally, a trip back to the ER and what does he do? Drinks and eats.

Not sure why he felt the need to grab a winter hat for ice cream, but he did.

That night my wife caught a very cool picture. Let me set this up for you. When I put him to bed, I will lay him in his bed and turn out the lights. I will say prayers with him, cover him up, and turn on his sound machine/night light. Then I’ll put on my reading glasses, grab my mini-flashlight and read my book where he can see me. He will eventually close his eye, knowing that dad is right by him, and go to sleep.

While in our bed that night, he grabbed his sunglasses and put them on. He grabbed his Paw Patrol flashlight and one of the books my wife and I plan on reading. He said, “Wook, Mommy! I Daddy!!”

Little by little – he is acting like himself.

We were home just in time to watch the sunset yesterday. Before the rain, the kids saw fire flies lighting up the back yard. So they ran around trying to catch them. Both were successful!

It’s been years since I’ve chased fireflies, but I have vivid memories of doing so. I hope they will never forget doing it.

Hopefully your weekend was a bit less hectic!

Sooner Than We Thought

We’ll be sending up a lot of prayers this week.

Andrew’s surgery was schedule to happen in late September. Sam woke up this afternoon saying that the ENT office had called and wanted us to call back as soon as we got the message. They had mentioned a while back that they may want to move the surgery up a little.

They hadn’t called back by the time I left for work today. Sam called me as I pulled in to tell me that they indeed had moved it up … a lot. She posted this earlier today:

Got a phone call today from Andrew’s surgeon that he went over recent testing Based on that, plus the increase in choking and aspiration, it was no longer safe to wait for surgery. So Thursday this sweet boy will go in for yet another surgery. This surgery is a big one, with a whole bunch of scary things. But we are going in with faith that this will be the surgery to fix his little throat completely!

We have no idea how long he will need to stay in the hospital. They informed us of the many possibilities that he/we could be facing. Very scary possibilities, indeed. However, we will be praying that all goes well and that he heals up quickly. This weekend will be very stressful.

If you wouldn’t mind sending some positive vibes, good wishes, or prayers our way, I’d appreciate it.

Another Surgery Soon

My youngest son, Andrew, has had his share of challenges in his almost two years. After his first sleep study, he was diagnosed with laryngomalacia. It was causing him to have sleep apnea. A surgery was done to correct that problem. While in surgery, a cleft was discovered and the surgeon filled it.

Three months later, he had a second sleep study and his sleep apnea index had gone down, but not quite enough. We opted to try CPAP, which meant a third (CPAP) sleep study. It worked for a while, but because of a lack of proper pediatric CPAP masks, we wound up stopping and attempting to treat it another way. Medications to help open nasal passages and the airway were prescribed and they seemed to work well, as he was sleeping a bit better (despite some louder snore).

Just before the Fourth of July, he had a fourth study and we discovered that his apnea is worse than it was last time. We also found that the laryngomalacia, which he should have grown out of by now, was still an issue.

Andrew had his visit to the ENT today and there was quite a discussion. It seems to the doctor and his colleagues that the main issue is the cleft. They will probably have to do a deeper scope to make sure there isn’t another cleft. The goal is to repair the cleft or clefts. They may remove tonsils and adenoids, too. Either way, it is a much bigger surgery than we anticipated.

He will probably be in the hospital for a few days, perhaps in ICU. We’ll be awaiting a call to schedule surgery Monday. They think it will be sometime in August or September. I found this video on YouTube, which only scared me more.

My wife and I are quite overwhelmed right now. We can only hope and pray that this will take care of Andrew’s issues and the healing will be fast and easy.

I thank you in advance for your good vibes, your positive thoughts, and prayers as we anxiously await a plan of action.