Updates on Kai

Kai in his new high chair (one of those space saver ones)
Kai in the indoor swing (school brought this for us to use)

Kai is doing pretty good right now. He has been healthy for about 3 weeks now. This is the longest stretch of him being healthy. Hopefully he continues to be healthy for a long time. Where to start with his updates...? Maybe I will start with his cranio cap. Kai had a cranio cap appointment yesterday. He has had the biggest growth (head circumference) in the past 2 weeks then he has ever had in a 2 week period since he has started with the cranio cap. He has had the cranio cap now for 17 weeks. Are we done with it yet?? Kai has pretty much outgrown his cap that he has now. We have decided to move forward with a second cap. He has had improvement, but we would like to see some more improvement. So he had another scan of his head and he will get his new cranio cap in about 2 weeks. Kai will be getting some other new equipment on Friday. He will be getting his hearing aids. I'm eager to see how he is going to be once he will be hear better. Hopefully he will adjust to them fine.

Kai is now 9 months old. He doesn't look like a 9 month old. He is definitely on the small side. He has his 9 month check up on Friday, so I will blog about that appointment after the weekend. Kai, in a sense almost seems like he is like 6 months old. Last week when he was weighed, he was at 14 lbs 14 ozs. He is below the curve. His physical development or his developmental milestones are pretty much at like a 6 month level. In the past few weeks, Kai has started doing more things. He is now rolling around all over the floor. He grabs his feet and plays with his toes. He is grabbing at toys more and bringing them to his mouth. When he is on his tummy, he is lifting his head more. When he is sitting in something or sitting on your lap, he tries to sit upright instead of leaning back. He doesn't sit by himself yet. He does sit a little better with some support, but does get floppy at times. I think that there a few things that have helped just recently to accomplish what he is now doing. One is his health...he is healthy and has more strength. Two is kinesio tape. At therapy a few weeks back, we started using kinesio tape on Kai. So what is this tape? "Kinesio tape or its other name, Kinesio Tex Gold, is a specially-designed heat-sensitive tape that offers the patient or athlete extra support and stability during rehabilitation. Kinesio tape allows full range of motion during daily activities. " Kai uses this tape on his stomach to basically remind his stomach muscle to work. I really believe that this is helping him. Kai still doesn't sit up on his own. We are still working with him on that. Just recently, therapy has been working on hands and knees position with him. He doesn't always enjoy that position, it's a lot of work for him.

Last but not least...feedings. This is a day to day challenge. His feedings at times get very frustrating. I think the thing that I fear the most is that he will loose ALL interest in oral intake. We have been "playing" around with his feedings since day 1. So with the tube feeding. He usually eats every 3 hours. He gets 115 mls (just a little under 4 ozs) over 45 minutes. He cannot handle any more than that amount. He is currently on Nutramigen 24 cal. We were trying to get him up to 26, but it seemed like he wasn't tolerating it. We talk with a dietitian weekly and she sent us this Elecare formula to try with him, but after two days of him being really fussy during feedings, I switched him back to the Nutramigen. As far as oral, he still takes some baby food. He does #2 jars now. We have tried some new things with getting his mouth "woken up" before feedings. We dip a probe into either kool-aid powder or jello powder. It's a tart taste and helps get his mouth going. We also still use the Z-vibe. As far as the sippy cup, none. I cannot get him to take anything from the sippy cup. We have some vanilla flavored formula and still no interest. I cannot get him to be interested in the sippy cup. It makes me sad at times...I just hope he doesn't lose all interest in oral feedings. We have a feeding clinic appointment in a few weeks and I really hope they have some new ideas and techniques for me to help Kai. Kai has also grown out of the tumble form feeder chair, so we got him a new high chair. This has a 5 point harness with the shoulder straps. He fits so well in this chair and it makes feedings a little easier.

Well I will blog again next week. Kai has a few appointments on Friday. Jace turns 3 on Friday and we are having a birthday party for him on Sunday. So it will be an eventful weekend. Until next time!