A whole new vocabulary… 28 Days of Cayden, Day 5

We knew about Cayden’s bigger issue in his brain and the possible issues that might present for his life. But only as time passed, did we learn more about C’s ‘little changes,’ the smaller ones that made his life challenging in so many ways.  All of these are what are called ‘center line malformations’ meaning that they are mirrored on each side of his body. And all of these have their own set of specialists, vocabulary and procedures that we had to suddenly understand.

thinking elf

This one I call his thinking elf picture. We didn’t see his eyes for several days after birth, because of the ptosis, then when they did open, we called him our ‘one-eyed jack’ because he could only really open one eye. You can really see his wide-set eyes and long nose, narrow upper lip and small chin here.

This is most of the list…

The low-set small ears… the outer ears were a little small, but that is NOT what made them a challenge. Cayden also had bi-lateral sensorineural profound deafness, (caused by a defect in the formation of the inner ears). I will share this amazing story on Day 9!

Ptosis: this is where the eyelids don’t fully open. Surprisingly enough, this was not as fully mirrored as many of his other issues. Ptosis combined with small optic nerves (bi-lateral of course), made his vision questionable, so much so that he was considered legally blind for several years. You can read more about his vision progress on Day 8.

Laryngomalacia. Can you pronounce that or do you know what it means? It means floppy airway. This caused noisy breathing, or stridor, most of the time for Cayden. I learned to love the sound of his daytime ‘snores’ and know he was sleeping well at night because I could always hear him breathe. After his death, the house seemed way too quiet with out his snores to keep us company! I will share about how this condition affected our lives on Day 7.

When C was 3 or so, we determined through X-rays that he had a bi-lateral bone malformation in his elbows. Called congenital bilateral radial-ulnar syntosis, the 2 forearm bones were fused at the elbows, prohibiting him from twisting his arms properly. This was the main reason for his lack of mobility in his hands, and why it always looked like he had little wings. The orthopedist said nothing really could be done to correct this, it was just something that he was going to have to live with and learn to work around. If you make a fist and face it down. Then, turn it up as far as you can. Most people can do a 180* turn. Cayden’s could only go from fist down to not quite 90* perpendicular. Given the additional weakness in his arms, and his brain’s conversation issues, this was just another frustration in his body not doing what he wanted it to do.

C surgery

Cayden after his first big surgery… on the most tender of areas.

After years of undiagnosed tummy and gas pain, unending searching, poking and prodding, it was finally determined that Cayden had genetic malrotation of the intestines.  It took a new GI doctor looking at old x-rays to tell us that this was a life threatening situation and that surgery was necessary yesterday. (Really, that’s what he said!) So, being us, we waited a few days in order to have Skylar’s 2nd birthday party, and scheduled the surgery for Monday (figuring we had been searching for the root cause of his pain for months a few more days wouldn’t really matter.) I will tell more about this surgery on Day 6.

He also had a micropenis and bifid scrotum, a common condition in boys with a midline defect. This means his parts were underdeveloped and not made properly. This was the cause for several rounds of hi-dose testosterone shots, 2 surgeries on that tender region, and many visits to the pediatric urologist. We also later discovered bi-lateral undescended testes, which were surgically repaired when he was in for a bilateral hernia repair.

Curly toes

This picture shows the ptosis and curled 4th toes pretty clearly. These cute little piggies were just not quite positioned properly on his feet. No surgical procedure could help this, they just had special pads put into his AFO’s to position them better and reduce pressure when he was weight bearing.

Other more minor conditions he had were fun little curled 4th toes, again, nothing to be done with this, but made making and putting on ankle braces challenging.

So for all these conditions, here are the doctor’s we had to see… Pediatric urologist, pediatric ophthalmologist, pediatric orthopedist, pediatric gastrointestinal specialist, otolaryngologist, endocrinologist. Less regular we had visits with the neurologist, allergist, pulmonologist, and geneticist. We also had pediatric vision therapists, hearing therapists, occupational therapists, physical therapists, speech/feeding therapist, orthopedist and a case manager to coordinate the IFSP. Add that to the pediatrician and I am sure I am still forgetting a few other physicians on the list.

Can you see my confusion with the vocabulary? Do you know what all those doctors specialize in? & if you didn’t read the paragraph, would you know what those conditions meant?

In all those first months, it felt like I went from one doctor’s office to the next. At each visit I took copious notes, which I could share with Joey when I got home, and try to interpret with google what the words meant. It was a tiring, challenging time, and not what we had hoped for in parenting.

But God tells us in Isaiah 55: 8

“For my thoughts are not your thoughts,

neither are your way my ways,”

declares the Lord. 

We came to see that through Cayden’s life, we would learn more than just a new set of vocabulary, but more importantly a new set of rules by which to live. And oh, Happy day! We’ll never be the same.

 Shira

 

FYI, if you click on the blue words, you will see a link to some more in depth articles on what these terms mean.

See you tomorrow when I’ll talk about C’s longest (& most frightening) hospital stay.

 

 

 

 

 

 

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