Good evening/morning wherever/whenever you are when you're reading this!
Well, we went to the lab to get Bella's blood drawn this morning to find out if her version of DEB is Dominant or Recessive. The test costs (somebody) $6,000.00 and will take 12 WEEKS to come back. I say (somebody) because while we like to think that everything is covered by insurance, we know that this is not always the case. So, with every new bill, we just wait to find out how it all gets ironed out. For example, the Clinical Psychologist in the NICU met with me for 1 hour, then dropped by one day for about 10 minutes, then we chatted one other time in the hallway for about 10 minutes. The bill? $3,900.00. I still can't figure that one out. I wouldn't blame our insurance if they didn't cover such a ridiculous fee!
Okay, okay, sorry for the venting.
Wanna hear just how STRONG Bella is? Guess how many of us it took to hold her down to draw her blood...guess...guess...
5
Yeah, there were 10 HANDS on her. She was practically levitating off the table. Luckily, the phlebotomist got it on the first stick, so it really didn't go that bad...oh, and that was in the morning when Bella sleeps, and she was sedated with Tylenol with Codeine.
Tough kid!
Other news...
Unfortunately, Bella has broken out with a strange rash on her face and torso that is turning into what look like hundreds of tiny blisters. And yet, her demeanor continues to improve. This disease is so confounding. We can't figure out what we did wrong to cause this breakout. We are just left with the fact that this disease, once again, is NOT IN OUR CONTROL. It is SO HARD as parents to be with that. We just want to overpower anything that comes her way with love, nurturing, and smart, informed care. Yet, even with all that, this thing will run its own course, and I realized that just because I surrendered to EB a few weeks ago, I have to continually surrender to it. That has been tiring lately.
Thank you all for your continued prayers and support. Again, we are maxed out physically, emotionally, mentally, and spiritually right now, and just don't have the strength at the end or beginning of the day to generate the intentions we would, so you are doing that for us and we thank you. We also realize that by caring for Bella in the hands-on way that we are IS generating the best for her...it just never feels like enough, ya know?
May God bless and keep each one of you today, and may God's abundance shower you with love and grace. In return, may you walk through today filled with love and gratitude for what you give and what you receive. If you keep love and gratitude in each moment today, not only will your day be increased, but mine will as well, knowing that you walk in the Light by doing so.
Good night.
the rash with hundreds of tiny blisters is NOT typically part of EB. It sounds like an allergic reaction to something. Was it after the blood draw? Where the people holding her down wearing latex gloves? Some with EB are also have latex allergies.
ReplyDeleteFrom Care Pages:
ReplyDeleteGod never takes anyplace where he willnot protect and give us what we need to deal with it. We observe the tremendous faithand belief you and Ang have and as always are in our prayers. Walt & Barb D.
Hi guys, Hang in there. Thinking of you often. Hey could her rash have to do with any of the new bandaging supplies or what they used on her for the blood test? I noticed after my pre op work for my recent surgery, my arm reacted to the tape which it never has before. I think they might have changed the adhesive or supplies that they use. Just a thought. – Erica T.
Hi Ang and Tim! I just finished reading the last three weeks of updates and what a journey you all have been on. I have been in treatment myself and have been unable to log on and check on beautiful Bella as I wanted to but I have been thinking of her and you all every day! I see she is doing terrific and that just makes me so happy, her foot looks great! She is gaining weight, has a great team of doctors AND got cleaned up by Brooke Sheilds? WOW! What an eventful few weeks! LOL! Did she get to play with baby Stella at the event? :) It really looks like you both are doing great with this hand that you were dealt, and I know that is not always easy to do.. so pat yourselves on the back! Congrats to each of you on surviving the blood draw and give big hugs to that phlebotomist that was able to get her on the first stick! That was great news! I continue to pray for you all.. I have a little something I want to send your way, its just been a little difficult to get out.. give me a few weeks and I will be back in the groove! Also.. don't worry too much about the medical bills.. VZW has great insurance! Thank GOD! We stopped counting here at 1.8 million.. and it was all covered (other than copays).. blessings! Our prayers continue.. keep up the excellent work and give lots of hugs and kisses to those gorgeous girls of yours!
xoxo Angela O.
From Care Pages:
ReplyDeleteGO BELLA! Gosh what a cute little girl! That pic of her in the striped shirt is just adorable! I think of you guys every day! Wishing you strength and peace as you move through the days...I am heartened and inspired by your tenacity and thoughtfulness! Best, Bob G.
Bella...you go girl! With all the love and support, spiritually, emotionally and physically that I know you are each giving her, Bella is so loved. Know that each member of your family is constantly in my thoughts and prayers. With love, Bernadette S.
It seems like everyday is a new challenge. Do your best to stay strong for your family. Let me know if I can ever do anything more. – Albert A.
h my, my heart goes out to all of you. It just seems like with every new day there is a different challenge. You as parents are strong but I can only imagine there are many days that the strength wears down and as you stated you don't feel it is enough. Always remember that you are doing the very best for Bella that you know how. I am so sorry you as an entire family have to endure some bad days but with the grace of God you will get past them and there is always tomorrow. Just remember before you get up each morning pray that today will be a day all of you can endure and that it will be a much better day than yesterday.
I don't know what you both endure on a daily basis I only know that I do feel your pain in my heart and prayers are always continuing. Hugs and kisses, Jan P. and Uncle Bill.
Tim & Ang, This scripture came to mind as I read this update. I will be praying that you can boast in your weaknesses ("God grant me the serenity...") that the enduring strength of Christ may rest on you. And also, that Christ's peace, which passes any understanding, would be your constant comfort. I'm going to throw a few more in there, just to encourage you.
"To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." (2cor 12:7-10)
" The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint." Isaiah 40:28-31
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phil 4:6-7
Our love & prayers are with you. May you rest in Christ's care for you and your precious family! Love, Chels & Tim D.
From Care Pages:
ReplyDeleteI wished I lived close by and could bring you over some home cooked meals and try to be of other help. Thank you for sharing your journey of faith and love. Stay strong! I can't wait for the day when Bella can tell you how much she appreciates your courage and love. Mimi B.
Guys -- We are sending you love and strength and holding the intention that you and Bella will continue to heal and gain peace. – Lynne B.
GO BELLA! Gosh what a cute little girl! That pic of her in the striped shirt is just adorable! I think of you guys every day! Wishing you strength and peace as you move through the days...I am heartened and inspired by your tenacity and thoughtfulness! Best, Bob G.
Bella...you go girl! With all the love and support, spiritually, emotionally and physically that I know you are each giving her, Bella is so loved. Know that each member of your family is constantly in my thoughts and prayers. With love, Bernadette S.
It seems like everyday is a new challenge. Do your best to stay strong for your family. Let me know if I can ever do anything more. – Albert A.