Ryan's January '09 Blog

January 4, 2009 - Happy 2009 everyone!  We hope that everyone had a wonderful New Years!  Ours was very uneventful - Ryan went to bed at 8 p.m. and Mom & Dad were in bed by 9:30 p.m.  On New Year's Day we ran to Parma and spent the day with the grandparents and both sets of great grandparents.  We had a great time and of course Ryan had lots of attention!  Ryan got his RSV shot on 12/30 and we had an OT evaluation on 12/29.  The OT evaluation determined that he needs OT again but they also want to do a sensory evaluation as they believe he needs sensory therapy.  They say this is to get his nervous system in check.  She said we need to do this first and then begin the OT.  We're hoping this sensory evaluation will be done in the next couple weeks.  On Tuesday the physical therapist worked on feeding Ryan.  She said his issues are behavioral and we have to be very careful because if we set him back it could cause him to stop eating for life.  Great...  So we've started working on a new feeding plan per her instructions and the first couple days it went great but it has gone downhill the last few days.  Could be teething or just Ryan being Ryan.  We have been getting bottle feeds in the 2 to 3 oz range, which is really good.  We still have a long way to go.  Hopefully we'll get there before the G tube discussion comes back up!!!  He still is saying ma ma and has started saying da da in the last few days.  He weighed in at 25 lbs 4 oz on Tuesday and is now wearing 18 month size clothes with a little growing room. 

January 15, 2009 - When the physical therapist was here last week we told her of how eating has gone downhill since we started the new feeding plan.  She worked with him and he did much better than she thought.  Her new tactic was if he did anything remotely negative she turned her back to him as opposed to walking away like we had been doing.  He did not like having her turn her back to him.  She said to keep at it but to also start trying him on what we eat.  Maybe we'd skip baby food all together.  Mom bought milk, spaghetti-os, Kraft mac n cheese, teething biscuits, etc.  He does excellent with teething biscuits.  When you put it in his hand he takes it straight to his mouth and chews on it.  Because he has the control he does well with it.  He has done pretty well with tastes of mac n cheese and spaghetti-os.  He's been given tastes of things we've eaten and done pretty well.  The milk he has done really well with.  When the physical therapist worked with him this week he did well but she scared him a couple times which made Mom worry that we'd go backwards.  Don't know if it is from that or teething but since yesterday the feeds have gone down hill but he has been more snuggly and appears to be feeling the effects of teething.  There is a molar on the bottom left that is close to popping through so we really hope that is our issue.  So the battle continues...  We continue to work with him and next week we start speech therapy.  This will be great as they will also be helping us with feedings.  Grandma Connie will be coming for 2 weeks in February to help us work him.  We have to get this feeding thing moving again.  The G tube is still on the table and we still don't want to do it since volume is our only issue really but our physical therapist was telling us that if the NG tube that he currently has irritates the cilia (little hairs in the esophagus that help push things down and helps keep reflux from coming up) they can stop working and it could make there be issues with the reflux that would force our hand and the surgeon would have to put the stomach wrap in.  If anyone has any thoughts or tricks besides the obvious one of get him hungry - we'd sure take them...

January 22, 2009 - We continue our normal battles - feeding, teething, stretching, etc.  Ryan has definitely been cranky and the other night we were trying to work with him crawling and he threw a fit.  Mom and Dad were crawling in front of him trying to tempt him to come after us and he got so upset and threw a fit.  It seemed like part of it was because he was trying to crawl but wasn't going anywhere and the other part was because we went away from him.  As you will see in the video, he was very cute in his jumperroo and Dad was clapping.  Ryan thought it was so funny.  The other cute thing he did this week was Dad was shaking his head no so Ryan shook his head yes.  So Dad shook his head yes and Ryan shook no.  This went back and forth for a bit and was very cute. 

We started speech therapy this week and the therapist referred us to a feeding therapist.  We start with this therapist on Tuesday.  We are so looking forward to it.  We're on a waiting list for OT but it was decided that we'd have some OT consults where they can give us ideas but won't start doing weekly visits until we get through this feeding issue.  They don't want too many people working with Ryan that he goes backwards.  We're ok with that for now even though we think he could handle it.  Super Bowl weekend the alternative therapist is coming.  We are really going to shock Ryan's system with a session Friday, 2 sessions Saturday and 2 sessions Sunday.  Then we'll see where we are.  We're keeping our fingers crossed this gets his nervous system a good jolt and retrains a few things.  We'll be having our 6 month developmental evaluation next week along with our 18 month check up with our pediatrician, which also means more shots.  Can you believe on Sunday he will be 18 months?