The Janke Joys

Clay had a busy week of appointments. He completed the second part of his feeding evaluation - the swallow study - and had his yearly vision test, along with his usual occupational and physical therapy and his last speech class at UNO.

Feeding evaluation???? Swallow study???? That is exactly what I would have said before diving head first into the world of Down syndrome.

Remember that post about it not always being rainbows and butterflies??? This week was one of those weeks - filled with specialists, doctors, tests, hospitals, and the constant reminder that Down syndrome is not always....easy. That extra chromosome, well it can cause trouble.

Where to start? Clay was diagnosed with tracheomalacia after having a scope of his throat during his ear tube surgery. Tracheomalacia is basically low muscle tone in the walls of your trachea, making breathing difficult. The doctor's don't seem to be too concerned with Clay's tracheomalacia and hope that he will outgrow it as his muscle tone strengthens. Because his body senses something is wrong, he produces extra mucus in his throat and always sounds sort of "phlegmy", especially when he eats or drinks.

I recently learned that children with Down syndrome (including several friends of ours) often aspirate on food or liquids and tracheomalacia increases the likelihood of this happening. Aspirating occurs when food or liquids enter the respiratory tract during swallowing. Clay had several symptoms of aspirating but I had always blamed them on the tracheomalacia. After talking with our pediatrician, we decided it was best to do a feeding evaluation.

The first part of the evaluation consisted of a Speech Language Pathologist watching Clay eat and swallow liquids. She agreed that he showed signs of aspirating (congestion after eating or drinking - that "phlegmy" sound!) and recommended we move on to the swallow study. The swallow study took place at the hospital. A radiologist and the SLP took a video x-ray as Clay chewed and swallowed foods and liquids laced with barium.

The video confirmed Clay IS aspirating on liquids and that he does not chew foods properly; he basically swallows whole. Why does he aspirate? Again, low muscle tone - a culprit of that extra chromosome. His tongue does not arch properly to push fluids past his open airway when swallowing.

So now what? Clay did not aspirate on solid food or thick liquids like yogurt and pudding so we will will add thickener to his liquids - a powder you mix in until you get the right consistency. So far, Clay is not a fan of it. We are also looking into feeding therapy to help strengthen his tongue and teach proper chewing techniques.

.....occupational therapy, physical therapy, speech, feeding clinic.....this mama is tired.

We had another appointment today - this one to check out little man's eyes. Luckily we walked out of there with much more positive news! Clay does have nystagmus, a condition where his eyes shake or twitch, mostly when he is trying to focus on something.

Again - low muscle tone.

His case is pretty mild and his pediatric opthamologist thinks it will go away on it's own with time and strength. Dr. Troia did detect a little bit of far-sightedness but not enough to warrant glasses....and we don't go back for a year!

As grateful as I am for Clay's health, determination, and strength - and as much as I try to highlight and praise those points, we do have bad days....and bad weeks. The truth is, Clay does have Down syndrome, and along with that comes a few more bumps in the road....but it is the road that was made for us.

"The course of true love never did run smooth" ~ William Shakespeare

My LOVE

Tuesday, April 16, 2013

A little update on Clay

Family Photo Shoot

Wednesday, April 10, 2013

Hazel and her pretties

Thursday, April 4, 2013

Sioux City Easter