 |
| Macsen Graybeard the Pirate |
We finally have a tentative cath date! I have only been emailing and asking since January :( We are all set for June 3 for cardiac cath and MRI - Macsen's 3rd.I am kind of panicking because the plan was to schedule his Fontan, his 3rd open heart, in the weeks following his cath if his heart looks healthy enough. We would stay in the area until surgery. Well after talking to scheduling today Macsen's surgeon - the amazing Dr.Spray - is all booked up until August!!!????!!!! That will be so much harder because 1) We seem to stay sick from start of school until Halloween, 2)the girls will be in school and we will have to leave them here in Alabama while we travel to Philly. Recovery from this surgery is rough and can be very emotional for the little ones - he is older now and so aware of everything. I think his sisters would be able to help him so much just by being there while he is recovering. I hate to leave them here. So I am not happy now. I feel like because Macsen is fairly stable and we live so far away he is kind of forgotten down here and that is not acceptable.
We are also struggling to find another speech therapist. Play therapy - where you play with the child and repeat words over and over in the hopes they will repeat what you say - worked very well for Macsen's sisters. They were both very verbal kids. But it doesn't work with Macsen - he seems to have a motor planning issue where he knows the word but he can't get his lips/tongue/mouth to form them. He needs a therapist trained in other techniques - like Prompt therapy- where they physically cue the parts of his mouth that need to engage to make the sounds. But there are no therapists trained in this anywhere even remotely close - and he would need multiple sessions /week. This coupled with our inability to get him feeding therapy is frustrating me to no ends. Living where we are is not good for him - he needs more than we can offer him in this area.
In happier news, Macsen is babbling more. We started him on another supplement - super disgusting Fermented Cod liver/butter oil from Green Pastures. He just couldn't digest the regular fish oil - it would come right back out :( But this fermented stuff seems easier on him and will hopefully help his brain and he takes it right from a syringe (blech!) He has started crossing his arms to show me he is mad. He hunches his shoulders and walks like a hermit when he's sneaking. He says "booya" for balloon - which believe me was a tough one to figure out. He wants to ride his little ride-on everywhere and can outrun me on it- I have to jog to keep up with him. Walking is still tough for him and he gets winded easily so he has figured out that by using his ride on he can keep up, even out run everyone. Plus he gets lots of "Awwwww"s which his little self just eats up. Always a show man.
 |
| Racing Kis to the kindergarten |
