Today I went to a feeding support group and was able to weigh Ally…and she was 8 pounds and 9 ounces.  Go Ally!

So I am curious as to who let me leave the hospital without my baby manual.  We are still and probably will continuely be adjusting to having Ally at home.  The biggest adjustment has definitely been the lack of sleep.  I don’t know any other full-time job that would let you work on 2 hours of sleep.  :)  Jonny went back to work last week, so I have tackled most nights on my own and it has been the hardest thing so far.  I never thought I could be so incredibly tired and still LOVE the munchkin that is waking me. 

 Both my mom and grandma have taken time out of their lives to spend a week with me.  They have been so much help, I am not sure what I will do without them.  Actually I know…laundry won’t get done and the dishes will pile up.  So thanks to you both!!  We have also had the added help from our Church.  Some very lovely ladies have brought us dinner and it has been fantastic to not have to worry about food at night.  Starting next week some fellow moms from SLOcountymommies have also volunteered to bring us dinners.  God has been so good to us and we are so thankful for all the help. 

 I will update soon with more pictures and continue to pray for little Ally, as well as sleep for the super heavy-eyed parents! 

Bath Time

Sleeping in the onesie Kevin made

Making her “O” face

Looking at Daddy

Jonny wrote this in an email and most of you have probably received it, but for those who haven’t…here it is:

Allison currently has a condition called ‘collodion membrane.’ That is her current diagnosis. No other diagnosis can be made at this point in time. This collodion membrane is a taut, shiny, thick layer of skin that covers her entire body, and is one of the early features of disorder called Autosomal Recessive Congenital Ichtyhosis (ARCI). I know, that is a mouthful. When babies are born with a collodion membrane, it is suspected that they have ARCI. ARCI can only be suspected at this stage.

As time goes on, the collodion membrane will peel. This process usually happens within days to weeks from birth. After the membrane peels, one of several things can happen:

1. Normal skin - About 15% of collodion membrane babies shed the membrane and then have normal or nearly normal skin. This group is called ’self-healing collodion babies.’ Obviously we are hoping for this scenario

2. Lamellar Ichthyosis (LI)- A specific type of ARCI. Characterized by brown, scaly skin (and other features). Babies with a history of a collodion membrane at birth, who then go on to develop these features, are diagnosed with ARCI and more specifically, Lamellar Ichthyosis.

3. Nonbullous Congenital Ichthyosiform Erytrhoderma (NCIE) - Another specific type of ARCI. Characterized by red skin and fine white scales. Babies with a history of a collodion membrane at birth, who then go on to develop these features, are diagnosed with ARCI an more specifically, NCIE.

4. Somewhere in between - Many babies have a mixture of skin features from both LI and NCIE.

5. A different disorder altogether - There are a group of other disorders that can also present with a collodion membrane. While one of these is possible, it is much less likely given that all the specialists were agreement that she doesn’t have any of the features of these. I won’t go in to these now.

Okay, are you still with me?

Lastly, with respect to severity of the condition, Allison’s symptoms can be anywhere from mild to severe. This is true whether she has LI, NCIE, somewhere in between, or whether she is a ’self-healing’ collodion baby. Of course we are hoping and praying the her symptoms will be mild, but God is good and is in control.

Here is a pic of her before her first Doctors Appointment:

We were able to come home Monday evening and it has been great being home. We are ALL adjusting to this new part of life and pretty much can say that we are ALL sleep deprived. I am including some pics and will post some information on her condition soon. Thanks again for all the prayers!