Thursday, June 14, 2012

Down Syndrome Clinic and More


Alaina took her first of many trips to Justin’s doctors appointments today.  We hit the DS Clinic and made our first visit to the GI doctor.  They both went very well in their own way.  And Alaina did her part and quietly slept through both appointments.



The DS Clinic was first, and I like going to this appointment because I like showing off what Justin has learned.  He did great!  He drew circles and identified pictures and stacked blocks just like a champ.  And it has been a long time since Randy has been to an appointment so it was good for him to see what goes on and what Justin does.  He got an OT and speech evaluation and both set his developmental age right under three years, with a smattering of skills above three.  They both were very encouraged with his rate of progress.  He is still making large gains, with no signs of plateauing.  And the doctor was encouraging for the first time with some of Justin’s medical struggles.  She agrees with our decisions about his sleep problems and was just as frustrated as we are with searching for answers.  And she told us that the protocol for DS has added a sleep study at age four for all kids with DS.  It seems that it is more prevalent than once thought, close to 50-75%.  And it only increases with age.  I had felt that she dismissed our concerns before, but now with more studies and a change in protocol, we’re not as hyper-sensitive as she once thought.  It was a good appointment and we are now good for another year!



The afternoon brought us to the GI doctor.  We went to one of the satellite clinics on our side of town, the place that is the parking nightmare.  Randy had never been there (it’s difficult for me to remember where he hasn’t been since we see so many doctors at this clinic) it figures we would find a place to park right away.  The first thing the doctor wanted to do was take an x-ray since she had looked at his chart and saw the horrible x-ray from September (which was the worst she said she had ever seen and that was after 6 diapers.)  She couldn’t see the x-ray from the ER so she wanted another baseline.  It wasn’t so bad, but Justin still was pretty full.  So after much discussion and debate, she decided the best course of action was a colon cleanse and then start over with a maintenance medicine to keep him going.  She consulted with a doctor at the Motility Clinic, a sub-specialty within GI.  Does it seem crazy that there are doctors who just study the motility of food and waste through the colon and intestines?  It doesn’t seem like that would be a very popular specialty!  We will probably visit them sometime so I will get to see what that’s all about.  We get to do all this with Justin and go back in four weeks to report our progress.



So this weekend we will be staying at home, encouraging Justin to drink salt water and changing his diaper.  And probably giving him baths and doing some laundry.  We hope.  It always takes Justin longer to get his system moving so we’ll see how this works.  Everything is based in adult dosages so we have to be careful not to overdo it, but still give him enough to make it work.  We don’t want to have to do this again!  Justin has suffered so much, and I just want him to feel better.



This week was also VBS at one of our neighborhood churches.  The boys went last year and had lots of fun so I was glad they could go this year again.  Randy and I were able to spend some time together with Alaina which was a treat.  Next week is Sports Camp at our church and Travis is SO excited.  He has been anxiously waiting since last year.  He even learned his memory verse already so he could get a pin like last year.  He wants a wrist band to go with his from last year too.  It should be lots of fun!

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