Friday, September 21, 2012

Yay! It was my son's birthday! He is three. I can't believe it.
Oh My Gosh. I really want to be Peppy Peggy right now. However, there are so many appointments and new concerns swirling around in my head that I can't think straight. Honestly, these past couple months have been super, super hard.

There has been a lot of changes in my life. A lot of revelations. I don't know how to process everything. I am kinda at a loss of where to go from here, in relation to this blog and in general, i guess. I don't know. I am extremely overwhelmed and that is an understatement.  I am having trouble focusing. I am dealing with a whole new round of Edward issues. The first of them being his attitude towards me. (it is awful) Sickness adds to worry when he is unable to gain weight. He currently last weighed 11.11 pounds. We have therapy three times a week on top of new round of Seattle children's appointments; GI, Nutrition, spine, lungs, upper extremity orthopedics, eyes. I am just tired. I need to get away.

Bare with me, I need to just jot down everything involving Edward. So, his last surgery went well...Hernia repair and circumcision. We were in and out within a day so that was wonderful. We have started receiving therapy three times a week. We have a special education teacher come over on Monday's and Edward LOVES her. She is great! They play and sing songs. Edward adores it! On Wednesday, now changed to Tuesday, we have feeding therapy. Edward was lucky, in that we got to be evaluated by the top feeding therapist. She was great. It was her that got the ball rolling on a swallow study. Then Fridays we have pt. So back to feeding, last week we had a swallow study done. It showed that when Edward swallows his food he holds it in the bottom of his throat, right where his airway is. It takes him on average 3-5 swallows to clear the food but doesn't actually clear it all the way. There is residue he leaves because he fatigues from all the swallowing. So, those are two major risk factors for aspiration. End of story, G-tube will be put in within the next couple weeks. (he most likely has aspirated which would explain some respiratory issues) That leads to our recent gastroenterology appointment. E has been throwing up a lot lately and not pooping as well as he should. He is on miralax which seems to be helping. He probably has reflux which should be figured out with the upper gI ultrasound next week. The GI nurse practitioner gave us another laxative which we will not be using because it is habit forming, I need to do more research on that. She also ordered us a upper GI ultrasound to make sure his anatomy is right before surgery of his Gtube. He had his blood drawn to check for thyroid issues and any gluten allergies (to cover our bases.) She called yesterday and said he has elevated thyroid hormones. Will be scheduling an endocrine appointment shortly. Next week is insanely crazy. We have a pulmonary appointment to figure out his lungs. Hopefully schedule a sleep study and more tests. At our last regular doc appt, his oxygen was a little low. Nutrition will be involved here shortly with the coming gtube. Can't think past all of this.

loving the sun

remember last years pic?

has actual pants on!

my boys acting crazy!
pretty appropriate

1 comment:

  1. I know this is a few weeks old, so much has changed since then, I'm sure. But just wanted to say that I will pray for you whenever I start to get overwhelmed. I'll be thinking of you in those times, and imagining how you must feel too.

    So sorry for Edward's weight loss, g-tube, swallow study, and all that mess! I'm with ya! Miralax. Yeah. Hernias. Uh-huh. We should talk on the phone again soon. I always get the feeling that our paths run parallel.