Let the early intervention begin

It has been a busy week. Gabe is finally on a night schedule. We are fortifying his formula to 30cal which has allowed us to skip the overnight feed. Gabe slept 9 hours straight last night...it was amazing. If he wasn't wearing his pulse oximeter overnight I probably would have been running in his room every hour to make sure he was breathing. We are working on naps during the day. Gabe was originally taking about four 30 minute naps a day. I have started rocking and holding him during his 10am and 2pm feeds. This usually puts him to sleep, so hopefully that will get him on a little bit of a nap schedule. First steps came to the house on Monday. Gabe will start with a Developmental Coordinator who will help with cognitive milestones and an Occupational Therapist who will help with facial muscles, feedings, and reaching for objects. We went to the Thomas Center for Down Syndrome on Tuesday and met with Dr.Summar. I like her alot. She answered all my questions and was familiar with his history. She told me that Gabe was the youngest baby she'd ever seen with obstructive sleep apnea and he supported her research hopes that all infants with Down Syndrome undergo a sleep study by 6 mo of age. She also commented that Gabe has a very high arch in his mouth and wants him to meet with a feeding team before putting anything of substance in his mouth to make sure he is safe. I agreed since he gags alot and I don't want any formula going in his lungs. Problem is, the earliest appt. with the feeding person in Dec.1st. They will be calling me if there are any cancellations to get in sooner. It sounds like feeding might be a slow process, so we'll probably have the Gtube for awhile...at least as back up if he doesn't meet his caloric requirement with formula, rice cereal or baby food. We saw the Pediatrician today and she was thrilled with how Gabe looked. On the Down Syndrome growth chart, he is 50-60th% for height, 60th% for weight, and 50th% for head circumfrance. She hadn't seen him in awhile and was so happy that his breathing was less labored and he's no longer pale. We can't get immunizations till 8 weeks after heart surgery, but she assured me that we would catch him up eventually. All of the practitioners agreed that Gabe is cognitively doing well with tracking, responding to faces, colors, lights, etc. He has quite the personality and is starting to "fake" cry if he hears my voice and just wants to be held. The muscle tone in his legs is pretty good. He does have to work on his upper body strength. Open heart surgery and laying in a hospital bed for 2 months took a toll on his shoulder and neck muscles. He has a baby gym that he loves. Laying him on his back and expecting him to swat at objects is too much for him right now...kinda like expecting him to do a pushup...so, we are proping him up on an angle so he just has to reach forward to touch the objects. We are also rolling up towel and laying him over it for tummy time. This roll allows him to have alittle more chest support. We are also holding him with his back against our chest facing outwards. This will allow him to find his head balance and he enjoys the stimulation. Gabe is really into faces right now so we are also making lots of expressions when we interact with him. These activities have been helpful and I'm already seeing improvements.

The following video is a promotional add for CCHMC. Gabe is briefly on the video at 48 second and 1:30. He's famous!