It has been a very busy week, and it's only wednesday! And I can't even blame it on Christmas Holiday Rush either, this is just routine and some not so routine stuff going on.
First of all, Josh had his yearly E-Lap testing done on monday. In Early Intervention you meet yearly with all the therapists to go over the goals you set, see what is mastered, what needs to be worked on, ect. They also do testing to make sure the child still qualifies for the program. So the testing was on monday morning and the meeting to see how he did as well as go over everything was yesterday afternoon. So the great news is that we were able to pass off more than half of his goals. But they were goals such as sitting, rolling, crawling ect. (you have to remember he was 6 months when we did his initial eval). So that was exciting. He didn't pass off any of his feeding goals, but we did dismiss a couple of them since they don't apply to his specific situation anymore. So when his testing was all scored, he came back with an average developmental age of 10 months. The specifics were: Gross Motor 13 mo, Fine Motor 14 mo, Cognitive 10 mo, Language 8 mo, Self-Help 8 mo, and Social/Emotional 9 months. So that is why he has an average developmental age of 10 months. So now we have a better basis to go on and where we need to work on next. His biggest hurdle is the Sensory Integration Disorder. But he is making progress so we are just proud of whatever he can do.
He also had another appointment with the GI clinic today. The good news from that appt is that since his reflux seems to be getting better, we are going to take him off one med for that and see how it goes. Wish him luck! The not so good news was once again, his weight. He gained some weight since his last appt, but still didn't maintain his percentage. He was in the 4th% for weight at his Oct, appt and was in the 3rd % today. So not only did he not gain in that, but actually lost. I was thinking we were doing great since he finally hit 21 pounds. But it wasn't so good. So we are going to start a new feeding schedule and regimen with him and we'll see where it goes. He has to double his intake of his high-calorie formula and that is going to be tough. We also got appts set up today for all the tests he has to have done for the Feeding Clinic appt on Feb 4th. So we get to go down and do more testing in January. It never ends! He was very traumatized today because he had to have blood drawn again. It was not pretty. I felt so awful when we were done today. It's hard to believe how emotionally draining these days are getting.
So that is our newest news on little Josh. He gets two whole weeks with a break from doctor appts, tests, therapy ect. I think it will be nice for all of us. All the presents he is getting for Christmas from Santa and my family are things that will help with his sensory delays. So that should be fun to have some new things that will do double duty. He sure deserves some fun after all the hard work he does.
Since it is Christmas I just wanted to thank everyone for the love, support, concern for our family and Josh. We appreciate all the help we get, especially babysitting (thanks Mom, Chan and Lorina!). We love our family very much and wish everyone a very Merry Christmas!
Happy Easter! (a little late)
5 days ago