Wow...it's been a long time since our last post :) We have been pretty busy the last couple weeks, it seems like we have a doctors appointment or a nurse or therapist coming to our house everyday...and when we don't have an appointment we are on the phone with them - even on the weekends! Aiden is still doing really well at home, mom and dad are starting to go a little stir crazy though! We don't get to get out much (except to go to the doctors, of course) and just when I was thinking RSV and flu season was coming to a close and maybe we could get out a little more with Aiden, the swine flu pops up. I can't wait until summer when the world is a little healthier of a place for him!
We got some good news today, Aiden finally passed his hearing test on both sides. We went downtown to a pediatric audiologist and she administered a more comprehensive (but way quicker and easier) test than the hospital had done and he passed right away. So, there is one less thing for us to worry about! He does go back to the eye doc on Thursday to do another exam to check for ROP, so far his eyes have been fine so this one might be the last for awhile if all goes well.
He went to Shriners last week for his feet and hips. It was different than I thought it would be. They did not want to re-cast his feet and recommended physical therapy until he is a little older and then see if he needs casts again. I'm not sure about that, while I love not having casts on his feet it seems to me that it is better to get it taken care of while he is younger and his tendons and ligaments are more flexible and easily moved. I also think that since the casts were already on for 5 weeks, why not just finish now? They also did an ultrasound on both hips, one is still dislocated and his new doctor does not think the harness he is currently in is going to fix it and she wants to put him under general anesthesia, force the hip into the socket and cast it. This is the bad news. I am not crazy about the idea of him going under anesthesia again considering he can't breathe on his own when he is under and would have to be put back on a ventilator, stay at least overnight at the hospital and then have a cast from his rib cage to his ankles on both legs for 3-6 months during the summer. There are other alternatives out there from the research I did and I am also not convinced that we have given the harness a good enough chance to work, his former orthopedist said it would take 3-6 months for it to work and it has only been 6 weeks, I am also not sure it has been fit right and that we have used it correctly. So, we are going to get a second opinion about their recommendations before we do anything. Even if casting is needed, I have seen casting done on just the effected leg and go only to the knee to make it more comfortable and better for the baby's development. I had heard such good things about the Shriners hospital and am a little disappointed in the treatment options they are giving us.
Aiden is still on his oxygen and we saw a pediatric pulmonologist who gave us an o2 monitor for home and told us to use it to start weaning his oxygen to 1/8 liter and then off oxygen during the day if he tolerates the weaning. She said she expects him to be on oxygen until he is around 8 months old due to his small lungs and being on the ventilator for so long, it does depend on his growth also. We will see her once a month. She was concerned about his weight gain and told us to aim at getting Aiden to eat 20 oz. of formula a day, right now he takes 17-19 oz. a day, so we are close! On 4/28 he weighed in at 7 lbs. 9 oz, his home health nurse weighs him when she comes every Tuesday, so we will find out tomorrow how we are doing with weight gain.
Other than that, we have had a physical therapist come and evaluate him (more good news - she said he was doing everything that he should be for his age!) and have an occupational therapist and child development specialist coming this week also to evaluate him through a state run program. After the evaluations are all complete they will write him a care plan and schedule in home therapy accordingly.
There is so much for us to do, we really enjoy the times where we are just holding and cuddling with him or playing with him on the floor with his toys. He is starting to sleep better at night - although he still has to be in bed with us and he is starting to let us put him down a little more. Which is good because Jeremy has to go back to work next week! 6 weeks has gone by way too fast!
Playing in his little gym...he loves it!
He loves kicking on the floor and looking at himself in his little mirror!
2 comments:
Hey guys!! It has been a long time since your last post. I have been checking it every day. Thanks for the update. I understand your frustration. Hopefully the 2nd opinion will sound better. Having a cast over most of your body does not sound fun. Hopefully little Aiden does not have to go through that. Sorry you have to go back to work so soon Jeremy. What a bummer!!!
Take care :)
Happy Mother's Day Holly!
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