Sleep Medicine Appointment and Bracing/Splinting

I felt blessed in many ways today... blessed that I was able to get Zach in so quickly, blessed that I had a friend offer to take the girls to play with her daughter so they didn't have to sit through a specialist consultation and so that I didn't have to manage three children while trying to discuss Zach's symptoms.

Today, after much discussion about Zach's "Zoning" episodes, and further investigating into his tonsils and a quick glance at the heavy bags under his eyes, the pulmonology NP determined that Zach is due for another sleep study and soon. His symptoms could be that of his RLS/PLMD not under control, apnea (which he was low on the scale before).

Zach's sleep study is on Sunday, June 12th and then we will meet for his results on June 30th to discuss the treatment plan.

On a not-so-blessed note, I received a phone call today from the OT specialist who did the clinical OT evaluation on Zach last week. She consulted with the splinting specialist and they have agreed that Zach will need to be fitted for "Curved 8 Oval Finger Ring splints" on his pointer and middle finger. The pointer finger will need one on top and one on the bottom and the middle finger will have one on top for now. These will help Zach's fingers to stop subluxating several times a day (subluxation is a partial dislocation where it does not come out of the joint completely and then pops back in). They will also be fitting Zach for a shoulder support brace for his right arm to begin with as they feel that his shoulder is subluxating often too.They may look into bracing his left shoulder later, but since he is right side dominant and he is experiencing pain there, we will begin with the right side.

Zach's muscles are becoming weak and fatigued due to the laxity of his joints and are working overtime to make up for the instability of his joints. His muscles are so fatigued that they are now twitching from the added stress on them. His thigh muscles (hamstrings) and muscles around his hips have become so tight that it is causing pressure around his sciatic nerve (this is due to weak muscles being over used to support the joints and they are tensed up and twitching). He was able to touch his toes in December and now he is not able to due to the tightening. This hot tub could not be coming for him at a better time.

The splint specialist will determine whether or not Zach's right wrist will need to be splinted at the same time (or at least for writing). In the meantime, we are still trying to determine what constitutes enough physical activity to wrap Zach's knees, elbows and ankles with ace bandaging for added support. They are discussing possible braces/supports on his legs in the future.

I will keep everyone posted as we maneuver through this next step.

With Hope in My Heart...
Danielle