Eat, Sleep, Pray

Monday, Tuesday and we are already exhausted for the week! Yesterday we had our appointment with Dr. Garcia of the Gillette Sleep Clinic. We LOVED him! He listened to what we had to say, asked us questions that matter to our family, and praised us for our attempts at helping Roa sleep. He did not start off by listing medications we could try or saying "sorry, babies with CP...." He gave us a plan to go by of a behavioristic approach through sleep restriction. It is a method that will be challenging for a few nights, but eventually, Roa should be sleeping for longer portions of time. If things don't go as planned, there are medications we can look into. It should also be noted, sadly, that many kids with CP do wake 1-2 times during the night for repositioning for a large portion of their lives. They CAN, however, learn to go back to sleep on their own.
The second part of our morning at Gillette was with a speech therapist. We talked with her primarily about Roa's issues with solid food intake. She helped us set up a swallow study, which we had today. The swallow study was really quite interesting and went very well. They perform an xray and video tape as Roa swallowed barium with juice, puree, and a cookie to see how he moves a variety of food through his mouth and throat. We found out that Roa does a good job of manipulating liquid and purees in his mouth. There is nothing mechanically wrong with his feeding. He does, however demonstrate immature patterns of swallowing chunky solids such as the cookie. Long story short, Roa eats like that of a 6-9 month old baby. He needs to develop more oral control of his mouth before we move forward with solids. With the help of oral motor activities and practice with various textures, Roa will eat chunky solids in the near future!! YEAH! It was a blessing to hear that the therapists feel Roa has good oral control. That should make speech production come much easier for him, although most likely delayed like his feeding.
Laurie, the OT, came this afternoon and gave us great ideas and props for oral motor activities. Roa has his OWN oral motor agenda,... he is getting a few more teeth! Poor kid. Makes all this sleep and eating work even MORE of a challenge for us all.
We also had a special delivery for Reliable Medical tonight. Roa's PT, Mary has set up for us to give a test trial of an adaptive stroller, assistive seating insert for chairs, and a prone stander (for work on weight bearing, trunk strengthening). We will be testing them out and seeing if we want to go ahead and purchase these products. It was actually exciting and emotionally challenging at the same time to have the delivery man leave this things. It is not easy to think of all the equipment we may be looking at for years to come. People take for granted how easy some of us have it when attempting to simply sit or stand. We pray that much of the equipment will be short term and that our little "Powerhouse" will continue to have the drive to do things independently.