All bundled up!Amber had a follow up with her eye Dr on Thursday. I was really worried about this appointment because at her last appointment in October she wanted nothing to do with them, put up a big stink and refused to even open her eyes. Because of her stink fest they could not accurately tell if her corneal clouding had gotten worse. At the time they thought, based on what little they could see, that the clouding had actually gotten better.
I'm very pleased to say that Amber behaved herself enough for them to actually get a good look at her eyes. The clouding is still present throughout the stromal layer (I'm pretty sure that's the middle layer of the cornea/white part) it is not getting better (not surprised) but it doesn't seem to be getting worse for right now. Believe it or not that's actually good news! The fact that it's there is just a fact of what Amber has, for it to be getting better would have been something close to a miracle. The fact that it's not getting worse is obviously great news since we can see other parts of her (like her gums) are getting worse. The other good news from this appointment is her eye sight hasn't gotten any worse and her glasses are working out very well for her! We'll go back to see them in the spring for another follow up.
Friday we made the long journey into Boston to see Amber's geneticist. Apparently really big snow bankings have a magical affect on people and they forget how to drive, which is very surprising given where we live! Our hour and a half drive turned into three hours and even though we gave ourselves extra time we were still late, but thankfully so was everyone else!
The magical snow bankings in Boston!The appointment went really well. They were very happy to see that Amber wasn't in the super sick state that they had expected. They gave her a thorough looking over, did some chest x-rays and blood work. We found out that her lungs sound a little icky but look clear on film, she has yet another ear infection and her potassium is a little out of whack. The best news from this appointment was based on Amber's last head/neck x-ray. It showed that she has a really good airway, better than expected so this alleviates some day to day stress. We're still not completely sure why Amber's been having breathing issues at night and running an on and off fever. We do know this past week the fever has been from her ear infection. To get things back to normal she's on an antibiotic, we're back to giving her inhaler more often, doing chest pt and just giving her whatever she needs to help. We're really hoping this will clear up the odd fever thing for good. Since she doesn't act like she's sick or anything is bothering her it's a good sign that nothing really bad is going on.
For general news around our house; we're due to get a lot more snow (again) this week which might put a wrinkle in early intervention and the pediatrician visit. The babes and I have about 10 more days till we take our trip to PA. This means I'll be spending the week getting my butt moving on making sure everything is all set for us to go. I've also discovered that in the absence of my mother I'm actually a pretty good housewife.
And now I'm going to proofread this, feed my super adorable baby and finish cleaning my shower, sounds exciting huh!
Proof that my baby is super adorable!