Sunday, September 16, 2012

Long day

This past Wednesday was a very busy and very LONG day for Cory, Mason , and I. The 3 of us spent almost ALL day at Childrens Mercy Hospital. Mason had a full day of specialist appointments.

We arrived promptly at 745 am to check in at the down syndrome clinic inside CMH. This is always an appointment I enjoy actually. I know that might sound odd to some....

First off :
The down syndrome clinic is staffed with an amazing bunch of specialist, nurses, and techs who all specialize in children with DS.

2nd :
All of the patients that are seen at DS clinic have that extra special chromosome. That means that we sit in a waiting room with children who are all just like Macy. No comparing mason to " typical" children while waiting to be seen.

There is something special about that waiting room , and the parents that are waiting .... There are knowing smiles and head nods ... Because we are all on a journey we never expected but the journey isn't as hard as we thought We are all there, being proactive for our children. I sit in a room with most children sporting their " battle wounds" ( open heart surgery scars), wear glasses, or wearing shoe inserts. Things that are normal now ..... Are things that get stares in " typical waiting rooms". And we don't get odd stares , because everyone in that room has something similar. It's a good feeling of being around " our own".

It's just a good overall feeling , one that very few will ever understand.... And I'm ok with that.

So , this is how our DS clinic appt goes :
Sit in a room while 7-9 specialist rotate through your room in a 5 hour span. .....
Add in a 16 mo old who wants to cruise around or crawl ( anything but sit on your lap) to the equation .. Makes for a long time trapped in a room! But keeping with his amazingness , Mason did great.

We saw a audiologist , speech therapist , occupational therapist , dietician, physiologist , pediatrician , and social worker. Mason got a great check up from everyone and was even a over achiever in almost all categories !

After his clean bill of health we rushed over to the endocrinology clinic to see the dr about Masons thyroid. Mason was being seen because his thyroid levels are higher than they should be :(. So after some talking and looking over his blood work results , we decided to do another round of labs then go from there before we start meds.

After we finished at the endocrin office , we high tailed it to children's mercy south for his ophthalmologist appt and lab work.

We saw his new ophthalmologist ( very very nice) we found out mason will need surgery for an eye correction on the 27th of sept. **mason tilts his head back to focus his eyes... To repair this he will have surgery to detach his eye from the muscles , then adjust, then re attach to the eye**. Surgery will last about 1-1.5 hours and mason will most likely stay overnight.

After setting up his surgery date we headed down to labs to get his blood draw .... Long story short... 1.5 hrs later and a momma **this** close to punching a nurse... We left with no labs done.

So after spending 8am-430pm ... We finally got to head home ... In rush hour traffic.

We were so tired from such a long day , that ALL of us slept in the next morning!

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