Tuesday, June 30, 2009

Our First Visit with Dr. Grant

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! :)

God bless.


  1. if Zantac is one of the step, i'd personally skip that step. From personally experience Zantac tastes horrible, burns going down and has to be given 2-3 times a day on a set schedule for it to work correctly. Pervacid is a much better choice. Its tastes much better, usually is only given once a day and works quicker and longer than Zantac. If Raglan is also a step, it has some pretty bad side effects (google it) and never worked for my kids. But everyone is different and it wouldn't hurt to try it. Some with EB have VERY, VERY slow digestion. With my daughter what should have taken 30 minutes to empty from her stomach took over an hour. Raglan is suppose to help with that, but in our case it didn't. A barium swallow can detect this along with reflux, but its not necessary unless the medications do not work. Or you'd like to see what's going on in there. Its non-invasive as well. Good luck!

  2. Comments from Care Pages Site:

    Posted Jul 5, 2009 2:22pm
    by Linda Short

    Tim, Angelique, Ali & Bella,

    Congratulations on the birth of Bella. I am so sorry that Bella has so many challenges. We are praying that Bella will one day be a happy, completely healthy little girl.

    We will look forward to sharing time with you in the future.

    Love and prayers,

    .Young Lim, Jae Hyung, Haybum & Hanulbom Cho
    Posted Jul 3, 2009 1:37pm
    by Jose Alfredo Martinez


    Blessing to Bella, you and your family. Bella has come so far and GOD is the main source of her healing. However, you and Ang should be proud of the great team work. God is rewarding you efforts!
    Posted Jul 2, 2009 7:50pm
    by Judith Green

    Hi Tim and Ang. I think of you every day and know the stress of a crying baby and sleepless nights. The crying is exhausting but mentally it is hard as we wonder if something is hurting and we are helpless to make it all well. It is a hard time of life but I do believe we grow in courage and strength for going thru it. I began my search for strength during those days and began to build a greater understanding of the power of God. I try to rely on that power to lead my life and to turn it all over to him. We are working hand in hand. He gives these children to those who are the strongest in his sight. Good will come of this struggle. With love to you all. Judy Green. Remenber: I am close by
    Posted Jul 1, 2009 9:39am
    by Jan Pflaum

    Oh my, these are the only words I can come up with at 7:30am this morning. Isn't it comforting to know there are physicians in this world who really care and will take the time to sit down and really talk with you. I was married to such a physician, (he passed on 13yrs ago of lung ca). We made a great team, he was very loving, compasionate and an excellent physician, his patients absolutely adored him. These phy. are rare these days but you have found some really wonderful ones. I am so impressed with CHOC, what a blessing this hospital has been to those of you that are hurting for your children and for the children that are hurting as well. We are hoping and praying that Bella will get better with her crying issues. It has to be very difficult. I can only imagine. It will get better............
    What would we do without the church, God is good. Much love Uncle Bill and Jan
    Posted Jul 1, 2009 7:47am
    by Sheila Marchetta

    It is great to hear the good news--Dr. Grant and Bella's weight gain.
    The bad news -- giving up coffee -- that's a tough one!
    Remember that "pulling out all the stops" includes -- asking for ALL the help that you need. You are surrounded by loving people, who are helping. Is there more help that you want/need? You and Ang need to all you can to keep yourselves going. Sometimes that means asking for more help.
    Meanwhile, my love and prayers are with you, Ang, Bella and Ali.
    Posted Jun 30, 2009 6:28pm
    by Barbara Dailey

    We pray for strength, grace, and dignity for you to handle this challenge in your life - and apparently our prayers are working - still thinking of you and praying for you - sending our love Walt/Barb
    Posted Jun 30, 2009 4:30pm
    by Russ Baldwin

    Nice to hear of the progress being made. And OOOOOHHH MMAANNNN, we will include your coffee detox in our prayers too!
    Love & Prayers
    Russ & Jen
    Posted Jun 30, 2009 3:29pm
    by Christa Lorenz

    Hi Tim! Still keeping you and your family in my thoughts! So happy to hear Bella is doing so well!
    Posted Jun 30, 2009 3:04pm
    by sam b

    Tim: I just looked at your pics and updates on CarePages (ok, I admit, for the first time in a while...) Wow! Bella looks amazing! No wonder--you guys are bathed in so much love and support (physical and psychic). Keep up the good work.
    --Sam B.
    Posted Jun 30, 2009 2:58pm
    by Lynne Boschee

    Sending love and good sleep vibes for all of you. So thrilled to her about Bella's progress. Almost 10 pounds!!!