Ear Tubes and Philly Updates

Dylann had her ear tube surgery Friday and it went well. All the fluid is out and she should be hearing great now. All the nurses loved her and called her their angel. She barely even cried coming out of the anesthesia. They talked some about her heart and that it is normal at her age. They didn't seem concerned at all but still wouldn't do an ECG or echo. We will be talking to her pediatrician about it more I guess. I also talked via email to the Philly MD yesterday and today so there are some plans in place. Dylann will be starting casting at the Shriners in Mpls 10/30 and he will work with the MD here as needed. Dr VB from Philly actually wants to do her hip surgery right away next summer as he likes to do it when they are 12-18 months. So Dylann has a big summer ahead of her next year in Phildelphia doing hip surgery and hopefully enough casting to have her feet in the correct positions. Maybe the MD here can do most of the feet work too. His nurse was very nice and said they will do all they can to co-manage with Dr VB so that we can hopefully minimize the travel as much as possible.

Updates

There have been a few updates over the last few weeks but just finally getting time to post. 

I heard a few weeks ago that our appointment in Philadelphia is 8/31/15. It could be a bit earlier but we won't know until early 2015 when the schedules come out for the doctors. I did email the new doctor this week to see what he thinks we should do in the meantime. He's traveling and will get back to me next week. I asked if he could coordinate with our Shriners to have her casted and maybe a heel cord release. More to come.

At her 9 month appointment, our doctor said we shouldn't wait any longer on her ears so her speech doesn't get impacted. We saw the ENT and have been trying to get that scheduled a few times now but she's been sick. Two weeks ago she had her first fever and it was rough on her and lasted three days. She seemed better last week so we had it planned for last Friday. She came home sick Thursday from daycare and her and Micah were up all night throwing up so we had to cancel it. So, it is scheduled again for this Friday. 

So this week we went to our second pre op appointment in 2 weeks. Her pediatrician actually heard a heart murmur today for the first time. So that was surprising. I'm not sure what it means. She said it was nothing because of the number of times Dylann's heart was looked at when I was pregnant and that it hasn't come up til now. Well I'm a worrier so I didn't love that answer. She did sign off for her surgery Friday. I left there feeling like.. Really, really.  This poor girl can't catch a break. I realize most people with murmurs are fine but it's another thing for her to work through. So, I told the hospital I wasn't doing anesthesia until they do an EKG Friday morning. So I guess we will know more then. 

Dylann also saw the neurologist again this week. He continues to be happy with her cognitive development. Yeah some good news!  He is somewhat concerned about her jaw. This hasn't been brought up to me since I was pregnant. He said that due to her chin being slightly in, that she could have trouble swallowing or breathing at night. Neither of which have been an issue so not sure the reason he brought it up. Just wanted to worry me I suppose. Why not? He said some doctors may want to move hers out. I actually think it looks pretty normal. Who knows. I think he felt bad after I told him if my struggles with the first orthopedist so he asked if he could help with something. I said I want more help orthopedically and I want her to eat. So, he did order more PT and OT through the clinic so this is in addition to what she's getting through the school district. He ordered an assessment for her eating since she really hates eating food and being 10 months now and not gaining much weight lately, it's probably time to work harder on it. 

So it's been quiet. Just doing dash stuff!