I am a 30ish year old mom of five precious boys and one sweet girl. Four of our children are here with us and two are in the arms of Jesus. Our sweet baby girl Hope was diagnosed with Dystrophic Epdermolysis Bullosa and our youngest son came to us through adoption, the Lord has shown us just how Faithful He is. We will continue to Journey and follow Him where ever He leads. We feel very blessed that God chose us to be the parents of each of our kids, and we look forward to what He has in store for us in foster care!
A noteworthy moment, Hope in carseat, not screaming her face off!
I could seriously gaze at this adorable face all day long...oh wait I do! Your turn! :-)
Hope is SEVEN weeks old and is still doing great. She is doing well with the Prevacid and the reflux is minimal these days though getting her to take the medication is pure torture. She is on the solutab because the liquid is so expensive and it is tough to dissolve it and make sure she gets the whole dose, not to mention she hates it. (advice welcome)
Her skin is still doing great. She has a few marks on her thighs from her diaper rubbing, from what I am seeing, when she does experience some repeated friction or skin trauma she just gets tiny little sores, I never actually see them "blister" just little sores like the size of this "o" or smaller. I had tried using a different brand diaper that we were given, but it seems we need to stick with the Pampers Sensitive or Swaddler and cloth diapers.
The biggest source of stress for me this week is her well baby visit tomorrow. She will be getting her first set of immunizations (please no bashing here, I am doing what is best for her. Children with EB are more susceptible to infection because they always have open wounds somewhere. After consulting all the experts I could find on the issue, this is the decision we made for Hope. So no vaccine debate needed or allowed) Anyway, I am nervous for her. I am typically a big baby about this stuff but with her I am finding myself way more protective. I am praying that the trauma from holding her leg and administering the injection does not cause any blistering to her little legs and that she bounces back quickly after the shots.
I cannot tell you all enough how much your prayers and encouraging messages mean to me. I have a tendency to get a little frustrated and overcome by worry. You all have been great at helping me keep it all in perspective. Thank you for walking this journey with us! Please keep up the prayers!
Go ahead and mention my child, The one that died, you know. Don't worry about hurting me further. The depth of my pain doesn't show. Don't worry about making me cry. I'm already crying inside. Help me to heal by releasing The tears that I try to hide. I'm hurt when you just keep silent, Pretending she didn't exist. I'd rather you mention my child, Knowing that she has been missed. You asked me how I was doing. I say "pretty good" or "fine". But healing is something ongoing I feel it will take a lifetime. ~ Elizabeth Dent ~
"When I Lay My Isaac Down" - Carol Kent "The One Year Book of Hope" - Nancy Guthrie "Holding on to Hope" - Nancy Guthrie "Empty Cradle Broken Heart" - Deborah Davis "Waiting With Gabriel" - Amy Kuebelbeck "Streams in the Desert" - LB Cowman "It Takes a Parent" - Betsy Hart "I'll Hold You in Heaven" - Jack Hayford "Crazy Love" Francis Chan "Radical" David Platt