Fixin’ His Flat

Alexander has worn his Starband now for just over three weeks. At his one week check up appointment some minor adjustments were made to the helmet – the edges of the ear cutouts were shaved and the edge of the band that touches the back of his neck was rounded. He does not seem to mind the helmet at all, though sometimes he plays with the back of his ear, as if he were trying to scratch it. Even at the one week mark, there was the slightest noticeable change in the shape of his head.

We just has his 3 week check up this past week and got good news! The Starband has improved his head by 1 mm in all directions since the last appointment 2 weeks ago and we can actually see a good improvment in his head shape so we are moving in the right direction! His 3 month re-scan and re-evaluation appointments have been scheduled for July so we are keeping our fingers crossed.

Prior to this last three week checkup, we noticed a red spot developing on Alex’s head where the strip of foam fits between the gap in the helmet where the strap is located. We left the helmet off for about 24 hrs until the redness faded and then put the helmet back on. About two days later, the red spot was back and again we left the helmet off for 24 hrs because we didn’t want a blister to develop. At the 3 week checkup, the foam in this trouble area of the helmet was blended and so far it seems to have helped. Also, we are making sure that strip of foam is firmly seated against Alex’s head to reduce irritation.

Life hasn’t changed too much for us at this point. We take the helmet off for an hour at night at bath time and wash it with baby shampoo. Alex also gets a nice shampoo and head massage during this time. Then we give him lots of kisses and cuddle time! Not being able to kiss him like I can without the helmet on is hard but I know it will be worth it in the end. Alex is becoming more active in rolling around and learning how to sit up so we’ve come to find that the helmet is actually protecting him at times. It will be interesting to see how he handles himself when he doesn’t have to wear the helmet anymore.

Also, Alexander has begun physical therapy for his torticollis. We’ve had two weekly sessions now and I’ve learned some new stretches I can do with him to help him lengthen the muscles on the right side of his neck. Attention-grabbing toys have been very helpful in getting Alex to position his head so he gets a good stretch.

Re-shaping and PT continue!