Monday, August 17, 2009

It's been a long time!

I haven't posted on here in such a long time. I thought summer would give me more time to blog and keep up with the cyber world, but with all three boys home... it has been nuts!

My little Josh is doing pretty good right now. He had his PEG tube placed on May 29th and has had some small problems with it, mainly with granulation. He then had the conversion done to a mini-button on July 29th. He came home a lot more sore than I thought he should and within a couple days had granulation started again. We got that under control then the skin started to do this weird thing and bleed and the hole got bigger... it was a nightmare. He was hurting alot and screamed through all feedings and dressing changes. After taking him into our pediatrician and not really getting anywhere, I demanded an appt with someone down at Primary Children's. Our GI doctor was out of town at this point... that was our problem. So we got another doc to agree to see him in between surgeries. He was diagnosed with a staph infection at that point. The doc looked and said he did not have granulation at that point. We got started on antibiotics and within 24 hours the granulation came back. UUUGGHH!!! It has been so frustrating. The staph infection is looking almost gone so we are making progress, but it has been rough. He has spent many (too many to count) sleepless nights. At least his weight gain had been what they wanted to see with the G-tube in.

But on the more positive side, Josh mastered the stairs!! We have been working on the stairs with his physical therapist since January! He could go up them 3 months ago, but he just could not get the down part. It is all part of his dyspraxia. But it all just clicked last week and he went up and down all by himself. We were able to remove the gate for our stairs and he can now just go up and down when he wants instead of waiting for me to help him. It's been an exciting thing for us. I knew the mom's on here would understand how exciting this is. I have told a couple people who don't know Josh very well and they look at me like I am crazy for being so happy he can go up and down. But we partied here for him!!

I hope all is well with all of you mom's and you are getting ready for another school year to begin. It's been a nice summer, but I am ready for school. I can't provide the same structure my autistic son needs at home, and we have had so much together time this summer.... we need a break! Good luck with the challenges I know you all face this fall and I am thinking of all of you!

3 comments:

Katie said...

Hooray for you and Josh!! Other people totally don't get it but celebrate anyway! I don't know if school starting will settle things down for you but I hope you get a chance to breathe. We will miss seeing you every week!

Preemie Miracle said...

YAY that is awesome. I am moving BACK to Utah and we have stairs. BRING HIM OVER!! yay!

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