Jaxon has finally decided to get moving. He is now army crawling some when he's alone and he knows whining won't get mommy to help. He is doing really well. The toy has to be super motivating or he will just move on to something within reach. I'm so excited. I know it will probably be a couple more months before he actually crawls but its a great start. He does some assisted standing at a table TARC has provided us, which is great to strengthen his legs. I believe they are going to bring him a special foam like chair so he can pull himself up and sit down without getting hurt, at least ideally.
We have been chosen as the March of Dimes ambassador family for 2011 in Topeka. Basically we are the face and promoters in Topeka. They like to put faces to the organization. I'm excited to be able to give back to an organization that did so much for us and so many others. I'm also nervous I'm not much of a speaker and there will be speaking engagements. I will have to get over it I guess because this is something that has been close to hearts since Jaxon came along. The biggest event in Topeka is the March for Babies April 29th in the evening in gage park. We will have a family and friends team this year. If you would like to be a part of our team please post your email or send it to me on facebook and when I get us registered I'll send you the information to get signed up. The walk is a lot of fun, there are lots of activities for kids including going through the zoo, face painting, a bounce house and many more activities before the walk. Afterward there is dinner, usually hot dogs and such. We are asking everyone in our family to join us. The purpose of the walk is not just to raise money but also awareness. So if you don't want to raise money but just join us for the walk or raise money and not walk that's great to.
Update medically:
We saw a cleft palate team at KU Med a couple weeks ago and they were wonderful. We left feeling like we really had a group of people behind us who we can count on for support. The surgeon decided no surgery and no further testing to find out exactly if he has a cleft or not. He said everything is working the way it was intended as far as he could see, but didn't want to do a scope to see behind his soft palate. He did say he does not have a short palate which is what the surgeon at Childrens Mercy had told us. We got conflicting answers from the surgeon at CM and when we talked with the surgeon at KU we told him it was important to us to get answers and a plan of action. Since Jaxon won't eat at all they can't do a swallow study to see where the food goes when he swallows. He would have to be able to take a certain amount of food to get a good idea and he refuses. The surgeon wants us to see their feeding team (a speech therapist, occupational therapist, dietitian, and behavioral therapist) for a few months to see if these great people can get him eating 1st. Some of the ideas he just threw out at us were things we had never even heard before so I'm hopeful they have some new ideas and give us some guidance. I know it sounds simple just give him food, but let me tell you its not that simple. He will eat syrup off a spoon and as soon as you put the tiniest piece of pancake on it he will spit it out and gag. He doesn't do any texture with food. He will stick any object in his mouth but if he is expected to swallow its a no go. Our pediatrician trained with this group a little and she said they are very good. So keeping our fingers crossed we can get him past this.
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