Ok so where do I even begin... well I got the call Friday from ohsu that they got the referral to see Aiden! So they will review his file and then pick the neurologist that best fits what Aiden needs. This is great news!!
So in the last couple of days we got to stop the steroid medicine which I am so excited about! And already the amount of crying has decreased... he still has periods of hours where he just cries... his eating has gone down, which is good but it at this time its almost gone too much in the opposite direction and now I have to worry weather he is eating enough.. so now we are closer to scheduling the g tube .. I worry that something may be wrong with his stomach because he went from eating tons sometimes 13 onces in a 2 hr period to now I'm lucky if he gets 6 onces and he's starting to throw up a lot after he eats, like he's throwing up what seems like all 6 onces he just ate... its amazing how things can change so much in such a short period of time.
The best day Ever though was yesterday I actually got him to smile!:!!! And then again this morning!!! This is such a great feeling!!! Its something as a parent I think we take for granted sometimes, but to hear that stome of these OS kids can take up to a year to have their first smile maks me so sad... so to see my little man do that makes my heart melt!
So we went exactly 2 weeks (14 days) without seizures... then on the exact 14 th day he had a small seizure... and then another day seizure free and then this am had another one... this is truly the worst feeling ever... we spent the two weeks with a miserable baby who was in pain and uncomfortable and cried most of the day... but we tried to enjoy every moment and second without a seizure but just waiting for the other shoe to drop and somewhat trying to prepare yourself... but it still is like a slap of reality reminding you that this is your life don't forget it... but I contine to enjoy the minutes we are seizure free and awake and hopefully smiling more!
Tomorrow we also have our therapy evaluation and I am so excited to gt this started.! I just know he's going to do great and it will make me feel like I am able to control something, and that I'm able to do something for him...
So I will update after the therapy appointment!
So in the last couple of days we got to stop the steroid medicine which I am so excited about! And already the amount of crying has decreased... he still has periods of hours where he just cries... his eating has gone down, which is good but it at this time its almost gone too much in the opposite direction and now I have to worry weather he is eating enough.. so now we are closer to scheduling the g tube .. I worry that something may be wrong with his stomach because he went from eating tons sometimes 13 onces in a 2 hr period to now I'm lucky if he gets 6 onces and he's starting to throw up a lot after he eats, like he's throwing up what seems like all 6 onces he just ate... its amazing how things can change so much in such a short period of time.
The best day Ever though was yesterday I actually got him to smile!:!!! And then again this morning!!! This is such a great feeling!!! Its something as a parent I think we take for granted sometimes, but to hear that stome of these OS kids can take up to a year to have their first smile maks me so sad... so to see my little man do that makes my heart melt!
So we went exactly 2 weeks (14 days) without seizures... then on the exact 14 th day he had a small seizure... and then another day seizure free and then this am had another one... this is truly the worst feeling ever... we spent the two weeks with a miserable baby who was in pain and uncomfortable and cried most of the day... but we tried to enjoy every moment and second without a seizure but just waiting for the other shoe to drop and somewhat trying to prepare yourself... but it still is like a slap of reality reminding you that this is your life don't forget it... but I contine to enjoy the minutes we are seizure free and awake and hopefully smiling more!
Tomorrow we also have our therapy evaluation and I am so excited to gt this started.! I just know he's going to do great and it will make me feel like I am able to control something, and that I'm able to do something for him...
So I will update after the therapy appointment!
Wonderful to read that he smiled to you. Such a joy, such a reward! I hope some day you will be able to post a picture of him smiling... Best thoughts to you and your baby boy.
ReplyDelete