Saturday, June 18, 2011

Another Down Syndrome Clinic Visit

This week we made our semi-annual trip to the DS Clinic.  It was a crazy morning getting everything ready for the day.  I had to go to work that night so I had to pack bags for the boys' overnight stay at Me-Me and Pop's and make sure the boys had everything they would need for day.  Travis went to a friend's house while we were at the doctor's and he needed to be dropped off by 7:15 to ensure our timely arrival at the Med Center.  So the boys ate breakfast on the road.  I am always surprised that somehow it always works out.  I have to say that it is in part due to my traffic reporter (Randy) who always gives me the best route to take.

We saw the doctor, OT and speech this visit.  Speech and the doctor were first.  I reported all the latest to the doctor - no ER visits, no major illnesses throughout the winter, what was happening with endochrin and the sleep clinic.  I still hadn't heard from the sleep clinic about scheduling the sleep study so I was planning to stop by after this appointment to see if I could work on that since they don't give out their phone number.  Well, fortunately, the doctor fixed me up and later that day I was able to get us in for January of 2012.  In the month since our appointment, they have gone from scheduling in November to January.  Yikes!  Back to this appointment:  She (the doctor) wants to be sure Justin does not have celiac disease now that I told her Justin is not eating wheat.  There are other problems that go along with celiac and she wants to send us to GI for a more confirmed diagnosis.  I think we'll go back to our pediatrician and talk things over with her before we make that call.  I don't want to go back on wheat while I am trying to potty train.  I hope that we can put that off for a little while at least.  The doctor said that she "aged" him at about 26 months, which is feasible for potty training so she gave us the go-ahead on that.  She was very impressed with his attention and good behavior.  He stuck his tongue out and said "ahh" on cue and went through all the steps just like she asked.

I really like their Speech therapist.  She is very kind and encouraging.  She was very impressed with Justin's progress and she showed his "age" at close to 27 months.  He answered some pretty hard questions like showing him pictures and asking which one do you read, which one is blue, and which baby is NOT crying (he didn't get that one- that was hard!)  She also was impressed by his attention and good manners.  They both recognized how that aspect of growth and development often get left behind and how important it is later in life.

Justin had a smattering of skills up to 36 months of both of their scales, which really encouraged me.

The OT came in later and she was beyond amazed at the way he sat and strung beads for her.  He hasn't done that in a while in OT and he did fabulously!!  She kept giving him more and he kept going.  He cut a piece of paper and made crosses and circles on the paper.  He stacked blocks and of course knocked them down.  He followed her directions very well.  She wants him to string smaller beads and build more intricate designs with blocks.  (Like tunnels and pyramids)

The doctor wanted x-rays of Justin's neck since there is a chance he could have a weak spot common in DS.  It's something they do around age 3-5 and since Justin is fairly active and also compliant they felt now was a good time.  That took hardly any time at all and we were out in less that two hours total!  I have never felt so good leaving the DS Clinic.  I was prepared to make this our last appointment if I didn't get more encouragement and positive feedback and they must have known because they were on their game.  We even got cleared for a whole year between visits now!  He's not making quite as much progress quite as quickly anymore so they are giving him more time to learn and perfect more skills.  (I am kind of glad for that because that gives me a year to get the potty training down.)

No comments: