Monday, May 25, 2009

so it's been a while.

So it's been a little while. I had a great mothers day, despite Genevieve being super 'edgy'. Since birth she has been congested. Her pediatrician has said it was normal, but it only seems to be getting worse. We were supposed to go to a BBQ with Andy's family on mothers day and we cancelled on it because of Genevieve's illness of some sort. She just was not happy, and if she was actually coming down with something I did not want to risk passing it on to andys niece and nephew.

Genevieve had another dermatologist appointment. It went well, but also had a downfall. What we thought was cradle cap on her head (even both her derm and ped said it was cradle cap before) it has been diagnosed as her EHK on her scalp. We had previously been told it wouldnt affect her head. she's been growing hair on the sides and back of her head no problem, but on top of her head it's just thick, scaly build up. Her derm mentioned that with the scaly buildup her hair is unable to grow through it, and i'm only hoping it doesnt stay like this. All those fears I had when she was born about her EHK being noticeable came back to me. I thought about her at prom. i thought about her at dance recitals. her wedding. if her hair cant grow, how will this affect her during those times in her life? Her derm told us to go pick up Nizoral shampoo and to try it. That usually it works out. It's an non-prescription, anti-dandruff shampoo that helps with scaly skin. it's working slowly. Still nervous though... when i pick at her scalp to get some loose scales off, her hair usually comes out with it, so its a bit discouraging. Gotta remain hopeful though. Things will be ok. Other than that, her derm appt went great. Her skin is looking great. We were told to pick her up under her arms as often as possible and to push tummy time with her a lot every day. She pretty much has no control of her head still, because when we put her on her stomach, she ends up with HUGE open sores on her chest. And when we pick her up under her arms, her skin literally slips off under our hands. Her derm has told us to keep doing these things and that yes it will be hard with the sores, but that it will build up the skin over time and it will heal to where it wont tear anymore.

Major thing in our life, we have moved to a different apt this weekend. We voiced concerns to our office at our apts about how our (old)apt always seemed so warm, and the building was so noisy. We had made several complaints since we had moved in about it, and finally opted to break our lease. They offered to let us move to the other dog building at no cost and would not raise our rent. In the 2 days we've been here we've seen a HUGE change. This building is nothing like our old building. We could hear nothing but the traffic from the busy county road our patio faced. Here, we hear a little noise from the pool in the courtyard, but mostly we just hear the birds outside. We can open the windows and patio and get fresh hair and the breeze inside. We actually get sunlight. Normally, it is a $400 deposit and a $400 transfer fee to switch apts here. Since we had only lived at our other apt for 6 months they let us just transfer the deposit, and they deemed the (old) apt as being unhealthy for Genevieve with how warm it always was with the lack of air. I think we got a pretty good deal here. Our old apt was just a standard 2nd floor (out of 3 floors) apt. 2 bedroom 2 bath. nothing fancy. everything was at least a year old in the apt. It faced north and directly across from our parking lot was a very busy county road, and we have a hospital about 5 minutes away so there was always emergency vehicles passing by. Our new apt is 3rd floor, faces west (towards the courtyard), vaulted ceilings. brand new carpet and vinyl. new lighting fixtures within the last year. both bathrooms redone a year ago. under cabinet lighting in the kitchen. MUCH MUCH happier. lol. Genevieve even seems a lot more comfortable here. I let her lay on the floor today and get in some sun, she loved it. Kingston (our doggie) laid next to her and soaked it in as well. Its nice and quiet here. Like i said we will hear people at the pool every now and then, but its not loud at all. we can still hear emergency vehicles, but it's not "right in your face" loud. haha. And we dont hear any other traffic. The move was very simple being that it was just the next building over and so far unpacking is a breeze. It's not like it's a new place where we have no idea where anything was going. It's the exact same floor plan, so it's simple, just put everything away where it was before lol.I am hoping to finish putting together Viv's room tomorrow, I am redoing it a little from the last apt. Once finished I'll post before (at the old apt) and after (the new apt) pictures to share.

The best part of my day today... brought many laughs to me throughout the entire day. Andy and I were on the balcony with Kingston and we came in and kingston followed. He must not have realized we shut the sliding glass door cuz he jumped up and ran straight into the glass trying to jump out onto the balcony. Funniest thing Ive seen in a long time. haha.

I am hoping to blow up some pictures I have taken of Genevieve to put around the apt.... I want this one blown up and put in our entry way...

Mine and Andy's bathroom is done in black and white, so I think I want this one in the hallway in our room leading to our bathroom...

and then i'm thinking various other pictures of her in both 4x6 and 5x7 size throughout our apt and our bedroom. And also take some more recent pics of her.

On that note, I'll end with this picture that just makes me smile (from the other day.)

Monday, May 4, 2009

a moment of truth...

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. :)