Wednesday, October 28, 2009

two little teefers

Last week I noticed that Genevieve has two little teeth coming in! One broke through completely already and the other has a corner out. They are her bottom front ones. So exciting!

Sorry this is a quick and short update, it's late.

Here's a recent skin picture taken tonight. She looks GREAT!

Monday, October 19, 2009

dada, dada, dada, daddy!

So Genevieve has always been a chatty little girl, just like her mama. But over the last weekend she's actually started making word sounds. She is successfully saying "dada", "nana", and "baba"... no stinking "mama" though! It's ok though. Pretty soon she will I'm sure. She doesn't understand yet what "dada" means, but she sure loves to say it to Andy!

(you can even hear her say "daddy" in the video)

so proud of my little lady!

Tuesday, October 13, 2009


seriously, could she be any more beautiful?

Friday, October 9, 2009

color changes.

Genevieve is doing well. We had PT today, and I discussed my concerns with her crawling, so we are now going to focus on getting her to stand and then walk. New exercises are always fun. Her PT couldnt get over how big and old she looked today, I'm pretty sure it was only because she (Viv) was finally in a onesie and pants, and not a sleeper like she has always been in. But who knows. She is now 8 months old (as of yesterday). I have no idea, what so ever, where the last 8 months went. The build up on her face is really becoming noticeable now that it's changing colors. :( I tried to gently rub the build up on her cheek the other night while in the tub, and the next morning her cheek had a blister :( she took a tumble the other day while sitting on the floor and scratched her forehead against one of her toys (you can see the sore on her forehead in the picture), she cried for a few seconds, but she's a tough girl.

Tuesday, October 6, 2009

rain drops.

Genevieve is asleep so sweetly next to me, so I figured I would write. She is doing great. She felt rain on her face for the first time this morning (normally I try to cover her head when it's raining). I wish I could've snapped a picture of her face. It was the sweetest, most innocent look a little girl could have. She hasn't been falling asleep very well lately. She fights and fights and fights it some more. She's been in her crib since birth, so I know it's not from that. Andy moved her into our room the first night and laid her next to me. She reached for my hand, curled her head up next to me and fell asleep within 5 minutes. The following morning she wouldnt take her nap, so he laid her next to me in bed and she did the same thing. Last night, same thing on the couch. And during the day when I want her to nap, I have to lay next to her and act like I'm taking a nap with her. Maybe a little separation anxiety? I have no idea. We have recently switched to having Physical Therapy every other week. It was nice to have last week off, but excited to see Amy (her PT) this week. After talking to some of our fellow EHK families, I've decided to talk to her doctors this week to see if we can stop pushing her to crawl. She does fine with pressure and weight on her knees, but tummy time just isnt going well anymore. We no longer need to wrap her chest, but she screams in pain when placed on her chest. I'm also worried about the trauma to her legs if she were to start crawling. Out of the other families I talked to, none of the kids crawled. If they did anything of the sort, they walked on their hands and toes with their little butts up in the air. Most started walking at about 10 or 11 months. I'd rather focus on building up her legs muscles and getting her to stand and walk, and just skip crawling, rather than causing her pain trying to get her to crawl.

Well, my little girl is staring up at me, talking to me. I hope everything is well with everyone :)

Monday, October 5, 2009

a random but thorough update

It dawned on me that I had not updated recently! Whoops!

Everything is going well. Working on our appeal yet again. So keep your fingers crossed! We are still using cetaphil on Genevieve and it's working amazingly well! Her feet are still soft. Her skin has toughened up and she's no longer getting sores that easily. And she seems a lot more comfortable. Oh and her odor is gone!!! Woohoo! She is sitting up on her own now, and never wants to lay down. Her favorite game to play is "Genevieve says..." which is pretty much she makes a sound, and you try to make the same sound back to her. She loves it. She happens to be curled up next to me as I write this. This goes to show she is very much a mamas girl. We laid her in her crib to go to sleep and she wouldnt stop screaming. After a long time, we decided to just bring her into bed (which very rarely happens), and Andy laid her down next to me, she reached up and grabbed my hand, nestled her head up next to me and fell asleep within 5 minutes. MAMAS GIRL all the way. She now has PT every other week, rather than weekly. We have finally found pants that go on and come off of her very easily without hurting her skin. Weather here is getting really cold, so Genevieve has a very cute hat collection going (ok so only two so far, but they are adorable!). Trying to figure out what to do for her feet this winter since socks usually end up with sores on her feet.

So enough of the random-ness. Not much is new on our end.

Did you know that this week is National Icthyosis Awareness Week? Well, it is. So as a mother to a child with ichthyosis, here is a piece of ichthyosis information for you... Ichthyosis is a family of skin related diseases, characterized by dry, thickened, scaling skin and effects more than one million Americans. I will post more info through out the week :)

one of Genevieve's new hats