Children's OT

Today Noah and I made a trip to Children's Hospital for an OT appointment.  These days we don't have to go to Children's very often, usually only every 6 months for follow-ups with his various different physicians.  In December though he had a new hand brace made for his right hand called a DMO.  It's basically a glove that is supposed to help with wrist supination, keep his thumb and fingers out, and provide some sensory input (it is fairly tight).  The DMO was ordered by his orthopedist but we had to see the OT at Children's to get it fitted correctly.  It took a few appointments and alterations to get the fit right (it is custom made in England and takes 3 weeks at a time for alterations!) and he has been wearing it consistently since January.  Unfortunately though we have not seen too much of a difference in his hand function with it, and it seems to make it harder for him to fully open his hand.  We had concerns with it from the beginning and it was suggested we follow-up with the OT.  Well today we were finally able to get into to see her and had a productive meeting.  It is still fitting correctly, although looking at the fit you can see how much he has grown in the last 4 months.  I didn't even realize it but it used to hit his elbow and now it is almost an inch below.  I knew he was growing but seeing him everyday you just don't realize how much!  She could see what I meant about his hand/fingers not being able to open fully and wasn't exactly sure why this was happening.  She thought it had something to do with his growth spurt as well as tightness in his hand.  She adjusted his nighttime splint to help with this and recommended we have him only wear the DMO for 3 hours a day, and not on Tuesday/Thursday when he has OT at school.  We also spent some time talking about electrical stimulation for his right hand.  She believes he is a good candidate for this and suggested we start this before he goes back to constraint camp this August.  I have to do some research on it but from what I understand it involves stimulating his hand with electrodes to help initiate movement, and to increase awareness of the muscles in his hand.  I'm sure there is a lot more too it and after I do my research I will make sure to devote a post to it!  Anyway she wants him to try it and I think we will have to take him there to get set up with it.  The biggest concern is making sure that you increase the intensity gradually, and I want to make sure we start it with someone who has experience with it.  This unfortunately means we will most likely have to take a break from seeing our local OT and go to Children's at least through the beginning of camp.  The OT thought it would be best to introduce it now as we have several months before camp as opposed to waiting until September/October.  We will also have to get set up with our own machine at home and I will have to be doing some of the therapy (yikes!), so best to start before the baby comes in July.  So here we go with another change.  If there is one thing I have learned in the last 4 years it is always expect something to be changed at every appointment.  At first this used to really bother me but I'm slowly learning to "go with the flow" and that this journey will involve a lot of trial and error as we try to do the best for Noah.  The last hiccup will be getting insurance to cover it and trying to re-allocate the sessions he has now to Children's.  This is always the hardest/most frustrating part!  Luckily we have a great referral contact at his pediatrician's office and I'm hoping she can at least get me started.  Looks like I have my plan for Monday afternoon!  Off to bed now-busy weekend ahead...