Here's my moment of truth, I am so incredibly sick of doing baths with Genevieve. I love the quality time with her when t is just her and I, but I hate sitting in a tub full of floating skin. But it is just the easiest way to do a bath with her to be fully submerged from the shoulders down. When Andy works late, or if I am out, we will do her bath with just her in the tub and it is just a huge pain in the butt and it doesn't seem to help any. I just simply cannot wait til she is old enough to sit up on her own so bath time is a little easier. the end of that moment of truth.
So Ive been asked a lot lately how Andy and I are doing, and how we are remaining so strong through this. We are doing just fine. We hit a bumpy patch within our relationship, but we got it worked out. We see Genevieve's condition as a 'one day at a time' thing. We know we could've been dealt a much worse card than Epidermolytic Hyperkeratosis. We feel we have a pretty good routine with her and her bandages. I'm sure it helps a lot that Genevieve is our first born, and as parents, we do not know what a healthy baby (with no skin problems) is like. I am home with her all day while Andy is at work, and I try to simply treat her just like any other baby. The only obstacle we have is tummy time. Not only does she hate it, but her chest usually ends up with sores on it. So we try to build up those neck muscles in other ways. So far it's working, slowly. All in all, we are doing great. Our family is just the same as any other family. Yes, we may have a daughter with special needs when it comes to her skin, but we don't dwell on that. We go out and do things like every other family (in fact, I think I go out with Viv more than the average mom with a 3 month old lol). She wears little dresses. We go for walks. She plays in an exersaucer and rocks out to music while sitting in her bouncy chair.
Genevieve is a little fussy the last few days. It was discovered today that she has a tiny cough. She just wants mommy right now. Hopefully it doesn't progress into anything worse and goes away within a few days.
It was an eventful weekend for us. Saturday evening we went down to Northfield, MN. Andy's brother had a little opening shindig for his new art gallery. We got to see some family friends of Andy's and of course show off Viv. :) Sunday, was well, my birthday. It was BEAUTIFUL outside. We decided to go for a walk.. me, Andy, Genevieve, and our chihuahua, Kingston. Luckily the fresh air tuckered out Genevieve and the long walk put Kingston to sleep as soon as we got back to our apartment. Andy and I managed to get some deep cleaning of our living room/dining room and kitchen done. It was much needed. Now I get to tackle the two bedrooms and bathrooms this week. And go through Genevieve's clothes... and spring cleaning will be all done! woohoo!
I think that is it. Nothing too exciting going on here. Genevieve is getting huge, I cannot wait for her 4 month appt in June to see what she's at. She has another dermatologist appt on the 12th of this month, so I will definitely write after that appt. :)