Monday, February 11, 2008

Down syndrome Clinic

We visited the Down syndrome clinic this week.  I considered cancelling as it was the same day as a field trip.  Since this only happens once per month it is hard to reschedule (and often conflicts with our field trips!).  I called about an earlier time, but was encouraged to show up a little early and that it would hopefully not take too long.

I didn't go early and am really glad of it as it would have made NO difference.  (I was told I could get labwork done early, but the lab tech showed up after I did!)  It's nice to see a positive in not running early in the morning.  LOL

What I thought would take about an hour - ended up lasting 4 hours.  It was a long morning.  Thankfully Roger had been able to take time off to be with our children and they all had a fun morning/lunch celebrating the Chinese New Year.

We waited for more than 1.5 hours before being seen.  During that time though I saw several other familes that had a child with DS.  It was interesting to me to see a variety of ages from 2 to teen.  I enjoyed watching the children and also their interactions with siblings and/or parents.  I talked with one mom there who shared some of her thoughts on DS.  These are things I've heard before and have to admit that it rings true with me too.

She talked about the blessing of her son.  She also said that she wondered sometimes if "we" weren't the ones with the problems - not the ones with DS.  In addition to being "advanced" also comes the addition of violence, hatred and bitterness that isn't seen so often in those with DS.  Now, I'm not saying that people with DS are without sin- far from it!  I've seen impatience, disobedience and tempers.  I've also seen an incredibly loving and forgiving nature that is quite beautiful.  I wonder if these sweet souls are here to help us learn about unconditional love, forgiveness, patience and appreciating the small things in life.  I know that those are lessons that I can stand to learn!

I was asked a lot of questions about Eliana's progress, development, medical history, etc.  We met with the dr who thinks Eliana is doing well.  Since we are very well connected medically (cardiologist, ENT, eye doctor, great ped, therapists, etc already in place) we did not need to see any of those folks at the clinic.  (They coordinate all of this for people that do need the services.)

We talked some about various testing.  She thought Eliana needed to be tested for thyroid and an ABC (don't remember what this is).  She cancelled the iron test and the celiac screen.  Eliana hasn't had a lot of exposure to wheat or a variety of foods so those tests would probably not reveal any useful information.  She noted that people with DS have elevated red blood cells (who knew?) and that this can mask problems with iron deficiencies.  (This dr has studied this specific thing.)  We will probably test for this at the next visit in 6 months.

While I didn't enjoy the hours spent waiting, I'm glad we were there.  It was good to see other families and children.  It's always nice to hear encouragment on your child.  Eliana was a complete doll!  She had fallen asleep before her blood draw - and even after waking up to that  (Ouch!) she was a sweetie (after crying for a short while).

As I was leaving, Eliana was in the stroller and we were waiting to check out.  A young man with Down syndrome (teen) was in front of us.  When he saw Eliana, he commented baby and started walking toward her.  I wasn't sure what he would do and just watched.  He stared into her eyes and began very gently stroking her face.  At the same time she just stared up at him.  It was such a sweet and tender moment.

We are incredibly blessed to be living in a time and an area with such great services for Eliana.  I am thankful to be here.  I wish all children that needed these services could get them.