We saw Dr. Grant, the GI specialist recommended to us from Dr. Metz, yesterday. He was worth the wait. We knew they had moved their schedule around to squeeze us in at the end of the day, so we were prepared to get comfy in our little exam room. He was awesome. Down to earth, frank, and very humble about the trials and tribulations EB parents endure in NICUs. He really got it. He is one of the senior gastrointerologists at CHOC, so he's seen quite a few EB babies in his day, so he was very familiar with everything from the start. It was SO NICE not having to educate him on ANYTHING!
He quelled some of our concerns about esophageal issues, and gave us a 7 step plan for dealing with Bella's reflux and gas issues. Bella is so irritable and crabby, that she is either sleeping or screaming, and that is wearing us out. It also puts her at risk for more blisters, because when she throws a fit, she bangs her hands, face, and legs and gives her self new blisters each day.
The 7 step plan allows us to add/drop out different treatments without having to see him in the office. We can just call in requests, and it will all be in Bella's chart. The guy was like a dream. Most of all, he spent a lot of time with us. We were his last appointment of the day, and he easily could have blown us off, but instead, he got really into her situation, and took his time talking about pros and cons of all different types of treatment options.
We feel a lot more comfortable having Dr. Grant in our treatment team.
Other good news...
Last Tuesday, Bella weighed in at 9 lbs. Yesterday, she weighed in at 9 lbs. 12 oz! She is 70th percentile in weight, which is HUGE, as malnutrition is one of the big three killers of RDEB babies.
Kelly, the home health nurse, called today to see if we needed her to come out and see Bella this week. Ang and I looked at each other and said, "No." Kelly was thrilled to hear that. She could tell that we have come a long way in a short time in terms of caring for Bella on our own.
Next Tuesday, Bella goes in for genetic testing. They will draw her blood (yikes) and then, if need be, they will do testing on Ang and I. We are still in the dark as to whether Bella has the dominant or recessive strain of dystrophic EB. Most likely, it's recessive, but we need to know one way or the other as it informs us as to the possible progression of her condition.
Meanwhile, our church continues to feed us, sending food every couple of days. We are so lucky to be surrounded by such abundance of love and support. I told my minister that I felt a little guilty receiving so much...we're used to being on the giving side, not the receiving side. Part of me feels like we should be able to feed ourselves...we're grown adults...but Dennis put me at ease real quick. He said, "That might be true, except that you deserve it." Then he just smiled at me, and that smile told me everything was okay.
We have been making dietary changes bit by bit, buying all kinds of mysterious things that we have never eaten/used before. Most of it has been strikingly good. There are a couple things that were misses, but for the most part, the transition is going slow and steady, and Ang has really charged ahead trying to cook and eat with new items every day. Today was my last day of 100% caffeine coffee. Tomorrow, I begin weening myself off by drinking half regular half decaf for about two weeks, then....oh man...decaf for two weeks, then....[shudder] off the coffee for good.
Thanks for all your encouragement/feedback/support as we rethink our lives to make the best environment possible for Bella. We know these changes will enhance all our lives ultimately, even if they seem a bit weird at first! We love you all and thank you again from the bottom of our hearts for sticking with us through this journey. Your love passes through us into Bella, and let me tell you, at 4:40 this morning as Bella was yelling at me while I did lap after lap with her in my arms on the stairs to try to calm her down...I needed every ounce of that love! :)