Medical Update

After a rough first 18 months together medically, Isaac has been wonderfully healthy for nearly a year!  Those tubes in his ears are stinking awesome!!  (You can read about our travels through the Valley of Chronic Ear Infections HERE). Seriously, we haven't seen our regular pediatrician since last November. I should probably call his office...

I've struggled with how much to share about my boy's medical status & our seemingly frequent trips to various procedures & specialists. The calendar can certainly look scary booked with therapists & consultations. And if you spend too much time on Google, you'll read that children with Down syndrome have 20% chance of having this problem or 10-15% at risk for that horrible disease. It can seem terrifying, but I guess that is exactly why I've chosen to share our story...the care of a child with Down syndrome does not have to be overwhelming. There are some extra tests & precautions, things our medical teams wants to be mindful of, but it's all good. Those screenings are put there to catch things early so nothing becomes an issue. I'm grateful to live in a country that provides access to excellent health care. Setting the national conversation regarding today's health care aside, America HAS health care access for everyone; we are so very blessed for this. Millions of people in the world die every day due to a lack of simple medical care. I don't even know how to extrapolate that number to the thousands (?) of children with Down syndrome globally that die daily because of anemia, or thyroid disease or obstructive apnea. All simple issues that my sweet boy is getting screened for now. I think of that when we are off to yet another medical appointment, then it doesn't seem so bad. And besides, our Heavenly Father is a Physician too. ;)

Filling out his own medical report.
Note the stethoscope around his neck!

Checking his own vitals
(Doing our work should lead to lower copays!)

Since Isaac has been doing so well, we've been able to get caught up on all the normal screening and testing needed for children with Down syndrome. We already get blood work every six months (anemia & thyroid checks) and are scheduled with the ophthalmologist & cardiologist at the same time. At our last visit to them both the ophthalmologist pushed our next visit out one year and are cardiologist said not to come back for THREE years That makes me wildly happy!   And like any other kid, we get to go to the dentist every six months as well (I need to call them too...), which Isaac does surprisingly well with.   Recently, we got an updated sedated hearing test which confirmed that Isaac does indeed have some hearing loss in one ear. This is consistent with mild dysplasia we found in the structures of his inner ear during a CT scan in the spring. This anomaly is common in those rocking an extra chromosome, but it also means he'll never need ear plugs at a loud concert. Lucky kid.   

Momma & son blood draw date
Everyone passed the anemia test!

He also just had an overnight sleep study to check for any apnea, which can be common with short little airways. This was quite the adventure. We drove 45 min North to check into a pediatric outpatient center where we got to spend the night under surveillance (yeah for me). Isaac also had to tolerate more than 20 electrical leads glued to his body. I was convinced this was going to be a nightmare experience (no pun intended) and brought every bribing tool I could think of...none of which were needed. ISAAC. DID. AWESOME. Only one episode of Elmo was watched and he didn't make one complaint though the whole event. I was freaking impressed with my kid!

Head leads going on.
Totally absorbed with Elmo

No-touching gauze going on.
Still absorbed with Elmo

Ready to konk out in the funny hotel

6am wake up call
Took three baths to get all the goop out of his hair!

 His sleep was a bit restless, understandably so with all those wires, but the technician got the information he needed so I am thankful. We celebrated with a 7am breakfast at Denny's and a low-key day so Momma could recover from her only 45 minutes of sleep (seems I don't like being videoed while sleeping, imagine that). We'll get the results in a few weeks, but fully expect that tonsils will come out in October then we'll have another healthy fall & winter. Thank you Lord!

For those praying about welcoming a child with Down syndrome into your heart and might be feeling a bit nervous about possible medical issues...you have nothing to be fearful of. Get a good calendar and a great pediatrician, then walk in the faith the Lord provides to you. He created your child PERFECTLY and will cover you through ANY issue that may come up...medically, developmentally, physically, spiritually...the same as any other child. I promise.