Tough Guys Come In Small Packages

Well, we officially made it through Ty's third surgery in a year and a half! On the menu today were his third set of ear tubes, an adenoidectomy, an ABR (auditory brainstem response) hearing test, and his annual bloodwork. Quite a production!

I noticed a few months ago that Ty's speech was starting to slow down, and he was pulling at his ear frequently following an ear infection. Even though his tubes were only 3-4 months old, I had a feeling they were blocked and not functioning. Sure enough, after a visit to his pediatrician and ENT, it was confirmed that his right tube was in fact blocked (neither doctor believed me at first either, because the ear drum looked good from the outside...don't mess with a Momma's intuition!). During surgery today, not only was his right tube blocked, but it was falling out, holding a mess of thick, infected fluid behind the eardrum. To our surprise also, the eardrum in the left ear was starting to grow over the tube, so it was most definitely time to replace that as well. We're SO glad we caught this early when we did!

The adenoidectomy was up in the air entering surgery today. His ENT is conservative with surgeries (which I greatly respect), and only wanted to remove the adenoids if absolutely necessary. After viewing their large size however, he did decide to remove them to promote better eustachian tube drainage, and hopefully avoid further surgeries.

Lastly, I requested an ABR hearing test to be done today, as it can only be done under sedation. To this day Ty has never had a "normal" hearing test result, due to all his ear fluid, and the inaccuracy of behavioral hearing tests. We were warned that ABR results are typically low immediately following surgery, so not to put a lot of hope into getting a good result. But like always, Ty surprised us all, and scored in the *normal* hearing range, despite all the swelling from surgery. The audiologist assured us that hearing is something we can cross off our list to worry about. Talk about amazing news!!!

Recovery was long. We've learned that our guy takes a little longer to snap out of anesthesia than most kids, but that's okay. Today's cocktail also included a couple of doses of morphine, which really took him to another planet for a few hours! By the time we reached the lobby though, he was asking to eat graham crackers, so we knew he was feeling a little better! Now at home he's walking around, eating all the graham crackers and apple juice he wants, and playing. Hopefully we're out of the woods!

Thank you to everyone for keeping Ty in your thoughts!

(no pictures today...if you'd like a mental image, he's in his football jammies, has some serious bedhead, has purple marker on both earlobes, and dried blood under his nose...a true hot mess! :)

What I Love About Being a DS Mom #24

Not Always Sunshine, Lollipops, and Rainbows

Despite the month-long string of perky blog posts and perspectives that tend to look on the bright side, having a child with Down Syndrome can be downright tough sometimes.  I mean, every child, no matter how many chromosomes, challenges a parent in ways that cannot be prepared for.  But having a child with special needs comes with obstacles that force you to go the extra mile, grow a thicker skin, and fight a little harder.

Finally coming home for the first time!

When Ty was born, despite our preparation for possible medical complications at birth, nothing could have prepared me to leave my baby in the Special Care Nursery for the first 6 days of his life.  Nothing quite tears at your heart like finally meeting the boy you had waited 9 long months to hold, and then leaving him alone in a hospital crib, while you go home to an empty nursery.  I missed his first bath, and first dirty diaper.  I wasn't the one to hold him for every feeding, or to comfort him when he had blood drawn.  Nearly 2 years later, it still breaks my heart that we weren't with him every second of his first week of life. 


The first few months of his life were filled with one doctor's appointment after another.  When you have a child with Down Syndrome, the hospital sends you home with a list of follow-up appointments to fill your calendar for the first month.  It's an endless parade of paperwork, exams, and medical testing.  You quickly develop a tough exterior as you listen to one doctor after another list off what is "wrong" with your child, and what may possibly go "wrong" in the future.  Ty was monitored closely by cardiology, neurology, and otolaryngology for his first seven months, until one day I looked at my calendar and realized that it was no longer filled with trips to the hospital.  He had finally graduated to the yearly check-up routine, and we could finally breathe.

For us personally though, the most difficult aspect of having a child with Down Syndrome has been to watch him struggle with respiratory congestion.  Being in daycare as an infant, Ty caught every cold germ that circulated the house.  At 2 1/2 months old, he caught his first cold, which very quickly settled in his chest.  Nervous at the sound of his breathing, I took him to his pediatrician, who administered several nebulizer treatments to no avail.  I walked around that small exam room for over two hours holding Ty's naked little body, listening to him gasp for breath.  In Ty's best interest, his doctor called an ambulance to bring him to the local children's hospital for a 48 hour stay.  I'll never forget watching my little peanut strapped into his carseat being rolled out of the doctor's office on a stretcher, with a smile on his face.  Our ambulance ride was uneventful, but the emergency room was another story.  As a routine procedure for patients being admitted to the hospital, two men came in to insert an IV into Ty's tiny, pudgy hand.  It was the first time I had ever seen my baby in pain, as it took the men four attempts to successfully get it in.  Ty fell asleep immediately afterward, with terribly bruised hands as remnants of his ordeal.  The remainder of our hospital stay was as diffcult as that first afternoon, and I quickly learned to stand up to nurses and doctors in the best interest of my son.  It was a tough lesson to learn that medical professionals do not always act as they should, and do not always know what is best for your child.  Though we have had other hospital visits since, this one was by far the roughest, and quickly inducted me into the club of being a special needs mom. 

I have watched my son have blood drawn numerous times, and have held his hand as he was put under general anesthesia.  My binder containing all of his medical records is overflowing, and I can recite to you the content of every one of the documents inside. 

Physical and speech therapy appointments are sprinkled throughout a typical week, and follow-up exercises are woven in to many of our daily activities.  I can tell you the typical age for any milestone to be reached, and am always aware of what the next goal will be.  Sometimes I wonder how my brain continues to function at all, with the roladex of knowledge that I am constantly adding to.

Even a play session is a chance to work on that core strength!

In spite of it all, I always come back to the same realization that the good far outweighs the bad.  I have written 23 days worth of things that I love about being a mom to a boy with Down Syndrome, but am already quickly running out of things that are tough.  For every challenge we overcome, we are that much stronger in the end, and I truly am grateful for that.  So no, being a parent of a child with special needs is not always easy, but then again, what parenting journey is easy???  I wouldn't trade this experience for anything.

What I Love About Being a DS Mom #17

Almost-Doctor Status

Have you ever wanted to be a doctor?  I have not.  I hate needles, get queasy at the sight of blood, can't remember really large medical terms, and don't really care about anatomy.  But you know what?  When you have a child with Down Syndrome, you are thrown into the medical world...ready or not!  

When I was pregnant with Ty, the doctors started throwing really large medical terms at me just halfway through my pregnancy.  "Chylothorax", "ventricular septal defect", "hydrocephalus", and "craniosynostosis" were all words that I was forced to learn, understand, and use in context...really quickly.  The doctors' explanations of the terms were wordy, formal, and just not user-friendly.  If I was going to give my son a fighting chance, I had to know what they were talking about in order to ask the right questions and prepare for what may be in our future.  So like it or not, I had to study and think like a doctor.  It was the first step toward the almost-career that I never wanted.

I have no idea what they could have possibly seen wrong with this adorable profile!

Thankfully, Ty was born without most of those scary conditions that I had read about while I was pregnant, and his heart defects healed themselves two weeks after birth.  The kid was truly a miracle baby.  However, having a child with Down Syndrome goes hand-in-hand with continual monitoring, testing, and evaluating of medical issues that are common in people with that 47th chromosome.  On the outside, Ty was a strong, healthy boy, but there's always a little mystery in the way that extra chromosome will affect different systems in the body.  So once again, I had to hit the books.  Within the first week of Ty's life, he had his heart, brain, kidneys, hips and blood scanned and tested for the numerous anomolies that he could possibly have.  As the doctors threw new terms at me like cranial sector scan, echocardiogram, and hypothyroidism, I did all I could to educate myself about what they were doing, and why.  To everyone's surprise, he was deemed healthy, and was sent home to begin our journey together.



Our little peanut in the NICU...
he wasn't as jaundiced as he looks here!!!



First time we saw our boy without wires!

As Ty has grown up, I have continued to stay aware of new medical issues that could arise, and never hesitate to research a word or medical condition when I need to.  And you know?  I'm actually pretty good!  I know the difference between the prefixes "hypo" and "hyper" and how they change the meanings of medical terms.  I can recite Ty's medical history in doctor-friendly language (they love those big words!), and can read through his medical records without a dictonary on hand most of the time!  I've had more than one doctor ask me if I was in the medical field myself, because I present like I know my stuff.  (Little did they know, I was studying up that morning, but that's okay!)  

His sleep study mug-shot...no injuries, just lots of gauze and tape to hold the wires in place! :)

As for the blood and gore that I hate so much, I've toughened up a bit!  I can watch Ty have an IV put in without flinching, and have yet to cry when he gets a shot (I still don't understand when I hear mothers say they cried watching their kid get a flu shot...really?!?!).  I have seen Ty wrapped in wires, and have had a vile of his blood spilled next to me by a very incompetent phlebotomist.  I have grown some very thick skin in my role as a mother!  So, I wouldn't say I have all the necessary schooling to be a doctor, but I'm at least worthy of an honorary degree at this point! :-)