Hello all...sorry for the delay still get adjusted to our new surroundings and we have had some days jammed packed with tests.
So they have already done many tests: cheek swab (to check Caleb's cells to compare them before and after transplant), blood work on Caleb and me, chest x-ray, swallow study to check for aspiration (he does aspirate (get fluid in his lungs) on non-thickened feeds), GI scope to check to see what is causing the diarrhea, CT of his head, and echocardiogram. The CT scan was done to check his shunt as it was tapped and reset before we left Children's on Monday. They also had to put a stitch in his shunt after the tap before he flew as he was leaking some spinal fluid from the tap. Dr. Markert believes she knows what is causing the diarrhea but wants to have concrete proof before she starts Caleb on the meds she thinks he needs. These meds can also effect the Thymus so she wants to get the gut under control before the transplant.
Also, as promised I have some pics that I have put in a video. I was going to take some pictures on the plane but I didn't think the pilots would appreciate that in flight, sorry to all of those who asked me to take pics but I did get pics of Caleb boarding and deboarding. He was such a trooper for the ambulance rides and the flight. Like adults the take off and landing were rough for him as I think it may have bothered his ears too. But he did great and he is adjusting to his new environment quite well. The rooms are much smaller. . . so all of those back at Children's who know how much stuff we had ....we are running out to the car often. :)
Well as promised here are some pics. And now that we are more acquainted I will post more often.
OHHHHHHHHHHHHH the address:
Duke University Hospital
Erwin Road
Durham, NC 27710
c/0 Caleb Hlebiczki
5th floor Rm 5125
21 comments:
Grandma Byrum
Sarah is truly correct when she says that Caleb is a real trooper, but she is a real trooper as well. She faces each test and study with such determination. As we walk through the halls together to the tests, her attitude is positive and delightful. The only thing she complains about is how much Law and Order I watch.
PS I send a big kiss to Brian. Ben and Stacy thanks for taking care of Dad. My love to Ben, Stacy, Hunter, Jenn, Chad, Sammie and Casey. We miss you all!
Grandma Byrum
Sarah is truly correct when she says that Caleb is a real trooper, but she is a real trooper as well. She faces each test and study with such determination. As we walk through the halls together to the tests, her attitude is positive and delightful. The only thing she complains about is how much Law and Order I watch.
PS I send a big kiss to Brian. Ben and Stacy thanks for taking care of Dad. My love to Ben, Stacy, Hunter, Jenn, Chad, Sammie and Casey. We miss you all!
What a treat to see those great pics - I must admit the video brought tears to my eyes!! I am so happy to know that so much is already being done - I do look forward to your updates. I know you know how much you all are loved and prayed for...just wanted to tell you again!
Love-
Chrs
I love the video and WOW Caleb gets 1st class all the way!! I am so glad things are moving and they are not sitting and waiting. Keep up the great work and I hope everything gets better soon.
Hugs and prayers,
Crystal and Eva
So glad they are taking action!! At least if you have to run to the car a lot you are in beautiful NC! God Bless you all...just as Caleb is lucky to have his Mommy with him, you are lucky to have yours with you. What an example of family you all are!! God Bless you all!! We love you. Kisses to Caleb!!!
love-
Aunt Jen, Uncle Andy, & Haeigh
HI guys!!! I just saw the latest video and I got a little teary eyes. Its weird looking over at your old room and seeing the door open. I almost went over and shut it the other day out of habit I guess. It sounds like you got one of the smaller rooms, try to get a corner. Let me know who your nurses are. If you see Julie RN (brunette) ask her about Damon and the med student story, she'll crack up. We'll see you in a few weeks. Holly
That was a great montage/video. Caleb has a smile that can light up an entire room--sooooo sweet. You will all be in our thoughts and prayers. It has to be hard on everyone for your family to be separated like this.
Sarah, Jeremy, and Evan
I'm so glad to see pictures of you all smiling...and like everyone else that watched that video...I have tears in my eyes! I love you all and can only imagine how hard it was to say see ya later to Daddy Brian and the rest of your family. I love you all, and can't wait to see Ben & Stacey in 2 weeks and hear all the stories that they have gotten from you guys!!
God Bless & Lotsa Love!!
Aunt Jess
Caleb at the age of almost 10 months your determination is obvious. Your mother, dad, family and friends get great joy from your delightful smile. We love you! May the blessings of our God continue to lift you over the medical hurdles. God bless you and your parents.
love and hugs to all
Hey guys! I'm so glad to hear things are going well at duke! It's so weird not having caleb here at Children's. I wish the best for all of you! I can't wait to see everyone again!!!! Take care.
Sandy
P.S. Tell Caleb to watch out for his eeyore balloons:)
Happy Birthday on Monday Sarah!! I hope you have a great day and share some smiles with Linda and Caleb! I love you! :)
Jess
Hi Sarah,
Happy Birthday! I'm glad you guys made it to Duke safe and sound. They'll take good care of you there. You continue to amaze me with your strength and positive outlook. You are are an inspiration to all and a fabulous mother to your little trooper. Again, Happy Birthday!
Dad,
Daddy missies you very much Bub Bub. I will see you soon, as I have to get on my own jet. Mine will not be as special as the one you got to ride in. You always get first class!
PS Happy 31st birthday Sarah
Hello everyone,
How are things down there? The South side is not the same without u guys.I just came back tonite from vacation and it does not seem the same without u folks being here.How is Caleb doing? How is Grandma,and Sarah how are you, just wanted to touch base tell Grandma that Grandma Donna says Hello, take care all and a special Hello to Caleb.
Donna
H.U.C,
I hope things are going well for sweet Caleb. He's the cutest!!
Love from MO,
Corrie
sarah
first i want to wish you a very
HAPPY MOTHERS DAY!
i just watched the video an wow little teary eyed as well. i hope all is going well and caleb and you are adjusting. you are in my prayers and may god continue to bless you all. Your a wonderful mother sarah and caleb knows how lucky he is for god to have pick you for his mom because only you could give caleb the love and devotion that he needs to fight. so stay strong and prayful and i look forward to hearing from you .
tell grandma linda i said hello and happy mothers day to her as well. love you all big hugs and kisses!!!!!!
alana
Happy Mother's Day Sarah!!
I love you all!!
Jess :)
We are so glad to hear that you & Caleb made it down there.
He is getting so big.
We're thinking of you!
Love you all!
DeNean & Deb
Love, prayers and kisses all around! We cant say enough about the blog! You're doing such an incredible job. The video is just awesome! xoxoxo angie and sissy
i know i am in a very very old post LOL probly a post u dotn want to remember but i jstu wanted to say how far hes come and how great it is i am in the archives looking at stuff he was and is such a fighter and has the best parents we could ask for lol love ya
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