Tuesday, April 20, 2010

Annual Down Syndrome Clinic Visit

Today we traveled to Pittsburgh to take the boys to the Down Syndrome Clinic.  I always feel so encouraged and ready for action after leaving this place.  Talking to a doctor (or our case this time a wonderful Nurse Practitioner) who's main job is dealing with children with Down Syndrome on a daily basis give us more confidence that we are doing everything right and giving the boys everything we can to hopefully make them as independent as they are capable of being when they are adults.

We had GOOD News today and BAD News today.  I'll start with the good. 

We were told that their receptive language is very good, to the point of high functioning good.  Their cognitive ability to process what they are being told to do was a pleasant surprise to Ms. Susan and as she put it, with their rough start they are doing wonderful.  The fact that they know and use approximately 200 signs was a huge bonus for them.  Our main push with everything now is to get aggressive outpatient speech therapy and occupational therapy which includes sensory therapy.  We have been on a waiting list for a new Autism clinic opening soon in Ridgeway called Possibilites... which is fully equipped for sensory integration dysfunction.. BUT we were told not to wait any longer and get them started right now.  So I will be making some calls tomorrow to set up an evaluation to get them started more local and ASAP.  Overall, we got the thumbs up for how well the boys are doing..  My main concern is speech and we were told that it still could very well come for them, don't give up and keep on doing exactly what we're doing... Keep on Keepin on, that's what we'll do.

Now the Bad News :(

When the boys have exams its often hard for the doctors to make sure their testicles are both decended.. Today it was confirmed that they do in fact need to see a urologist about getting the surgery needed to help out with this situation.  Isaac may very well need re-circumcised as we foresee issues when we try to start potty training him.. So I will be calling a urologist tomorrow too.  Then we are being referred to a new ENT as both boys have very large tonsils and she recommended we do a sleep study and remove the tonsils, but ask that we get a second opinion from the ENT about all of this and perhaps get another cookie swallow done on both boys to see how they are doing with drinking thin liquids.  If they are not aspirating we could stop thickening their milk everyday.  This would be HUGE!!!  We are also to consult with a podiatrist regarding one of Calebs toenails.  It is split the whole way to the cuticle and it never grows out, it just keeps splitting and splitting??  So it may be ingrown to the point of a surgeon needing to remove the toenail to let it start growing out fresh again...  And last but not least, the wonderful thing about Children's Hospital in Pittsburgh is that if you have a surgery scheduled with sedation and your kiddo's need any other work done they can coordinate as much as they can under one anesthesia, so if and when they go into surgery we will also schedule dental work be done on them.

So the little buggers have some issues with health that we need to address and get taken care of this summer, but hopefully everything is for the best and they will have a quick recovery from everything.  One interesting statement from today is that if they get their tonsils removed, it could possibly help with their feeding and swallowing issues AND with their speech... hummm, at this point anything sounds good to me to promote speech.

I am encouraged and proud of the boys at today's report of how well they are doing.  Its been alot of work for them and for us, but worth every minute of it.  Now if we can just get all the doctors appointments out of the way that we're going to have to goto and get the surgery over with, we can start potty training these smart lil buggers :)


MaggieMae said...

Great news on the receptive speech and not to worry/"been there-done that" on the "bad" news. It's never really bad especially if they can address it with surgery or other treatment/therapies. I'd love to share more of our experience with you regarding my guys' tonsils, genitals and speech as well just to add to your repertoire of information.

How great to have such a wonderful and experienced staff of folks so nearby and under one roof all with a focus on DS. Wish we had anything like that near here! From what I hear, there's one in/near Phillie which is the nearest one to me... but we've never been there.

Brandie said...

Hey, we go to Children's in Pgh too! I hate to be a downer, but my daughter had her tonsils removed last year. It only helped with her sleep, not her speech or drinking. I am still thickening her drinks. sigh.