History

Tuesday, January 4, 2005 5:50 PM CST

I have watched many people in the short time I was at Duke loose their children to this disease along with cancer. I ached for the families that lost their children but you will never endure the pain till it happens to you. My days go by and I wonder to myself am I going to make it through another day without my smiling happy baby Daryn. I have never been so empty inside and my heart hangs so heavy all the time. I asked myself along with other families that have lost a child, "Will I ever be able to function again"? I try to tell myself over and over that Daryn is in a better place now, but I believed that Daryn's "better" was with me. I know I sound selfish but I'm just so lost without him. I can remember my days were so long not sleeping for weeks at a time that i was so sleep deprieved that I missed out on precious time. We are all so consumed by medicines and pumps and everything else needed to keep our kids well, that we miss out on all the time we took for granted. I just want to say i am very honored to meet all the families that I did while a was at Duke.

Thursday, September 2, 2004 3:59 PM CDT

As many of you already know, we lost our baby Daryn to a bacterial infection at approximately 3:45 a.m. on Sunday, August 22, 2004.
He had been in the hospital since August 10th. He had been throwing up all night on Monday and was severely dehydrated. He was in shock by the time the ambulance got him to the hospital on Tuesday. After getting him stablized, they transported him to Beaumont Hospital in Royal Oak. He was getting better when on the weekend he developed Pancreatitis. After starting to get better from that he developed the bacterial infection. His body was so weak that he could not fight off this infection. There were many other factors also involved but I will not elaborate now.
We learned upon Daryn's admittance to the hospital that the c-dif he had been fighting for 6 months or more could be fatal. The doctor told us that if it does not get better, it can spread into the small intestine and eventually throughout the bloodstream causing death. This was a real shock for us as we had no idea the seriousness of c-dif.
Our hearts are so deeply saddened and there is such an emptiness in our home now, it's hard to keep going everyday.
Please continue to keep Theresa and family in your prayers. We love you all and miss you.
Daryn's Grandma Kay

Monday, July 26, 2004 5:13 PM CDT

Hello, Yes we are currently at Duke once again. Daryn just turned the big "3" on July 17th. Oh, the frustrations of having a consistantly ill child. If is not one thing it is another. In the past eight weeks we have been in and out of the hospitals with a fever or some fun infection. he is not eating and vomiting on a daily basis. I am sure this is normal seeing as a lot of families I have spoke with have gone through something of the same thing. I am seriously wondering when I get to finally look at my son and not see pain and suffering on a daily basis. It kills me that I can not be the one as a mom to make everything alright.
On a positive note Daryn has regained something lost.He now shakes his head "yes" and "no". So this is something that brightens my day. To all those parents out there reading this I admire each and everyone of you for have to go through this as well, no matter how good or bad things get.God Bless!

Sunday, March 28, 2004 9:23 PM CST

Hello!
We are currently here at Duke. Daryn has been having some upper and lower GI tract problems. The doctors at home seems to be scared of us when Daryn is sick. There is no written book stating how to fix these children. I know many parents must know how I feel. I went to U of M and they thought it would be better if we were here also. I am very happy to be here at Duke. It is such a relief for me. At home I just get very frustrated that I am the one playing doctor,nurse, and a full time mom. I guess this is job you get with this path you take. Don't get me wrong I love it and I am very thankful I am the one that gets to do it. I just get a little overwhelmed at times doing this on my own. I am just thankful I have a wonderful supportive family & a caring Krabbe family to share it with.
Thank you all XOXOXOXOXO

Sunday, February 1, 2004 10:25 PM CST

Hello!
Things are starting to look up. Daryn is still hitting some bumps right now but we have managed to stay out of the hospital for two weeks now.(knock on wood)We took a trip to U of M last weeek to see a new doctor. A doctor that knows Dr.K and has worked with Dr.Driscoll. This doctor was wonderful. He has referred us to the same doctor we were origanally supposed to come home to in Dec. but was currently out of the country learning about diseases like Daryn's. I have spoken with Dr.Main and is very interested in Daryn's disease and his personal care. I thank God for sending us a new and wonderful doctor Daryn's way.

Wednesday, January 14,2004

I know it has been a very long time but since November alot has happened. We are now cureently in Michigan. We have had many visits to the hospital. Daryn has had blood in his stool for three weeks now. These doctors and this hospital is been nightmare for me. I came home to a unsanitary and unfriendly environment. These doctors treat Daryn as an incovenience instead of a work in progress. They have explained to me that Daryn will get no special treatment. We sit in a regular clinic like the one at Duke we are not allowed to sit in.(somewhat healthy kids)I miss all of the families and the wonderful support system I got when I was at Duke. It's hard being home. It does have it's good points like my family and friends. Nothing will ever replace my Krabbe family. Thanks! I will be returning to Duke on Feburary 7. I can't wait to come back!Thought I would never say that, seeing as I just couldn't wait to get home.See you all sonn or talk to you via email.

Friday, November 21, 2003 3:05 PM CST

Greetings from Grandma Kay.

Daryn continues to make progress and get stronger. He is doing very well in physical therapy and we see him doing things now that he has not done for many, many months. It is so exciting to see. He now gives his Mom those great big open mouth kisses like he used to. It is all of your prayers that have brought him this far and the fact that he is just a little stubborn. Ha! We are so grateful for all of your support through prayer for Daryn and Theresa.
GREAT NEWS!!!!
We found out this past Wednesday that Daryn will be released to come back to Michigan on December 9, 2003. We are so excited. I know that Theresa is counting the days as she really misses her family.
I will be going down to stay with them next week and will return to Michigan the day they come home.
I pray that you all have a happy and safe Thanksgiving.

Monday, November 10, 2003 7:10 AM CST

Hello Everyone!

I received a note from Theresa and she says that she and Daryn will be home before Christmas. Hurray!!!!! Daryn is eating by himself, no more pumps, no more GVHD. Daryn is also holding his own platlets and blood which is a really great sign.

I've attached a new picture to the sight. It is a halloween picture of Daryn and Theresa...hope you enjoy it.

Please keep up the prayers and hopefully we will be seeing Daryn and Theresa soon.

Thursday, October 30, 2003 8:27 AM CST

Hello everyone!

We are very excited! Yesterday, Daryn was taken off of his IV's...Hurray!!!!! This is wonderful news, Dr. Escolar (Daryn's primary doctor) is very pleased with Daryn's progress and said that he is doing much better than expected. They hope to have Daryn off of the Adavan this Friday.

We are also happy to report that Daryn is eating better. He has at least three meals a day. It's these little things that strengthen our resolve that our little Daryn is A MIRACLE! We can't wait until he can come home and be with all of his family and friends!

KEEP THOSE PRAYERS COMING!

Thursday, October 23, 2003 10:50 AM CDT

Hello everyone...it has been a while!

I just spoke with (grandma) Kay and got the most recent update on Daryn. The MRI that Daryn had last week did not show any change. However, when meeting with Dr. Escolar (the developmental specialist) they were pleased with some of her observations. She was very happy to see his range of motion in his arms and legs and was pleased to see his eyes follow her movements. Dr. Escolar said that his back is weak and they will have the therapist work on strengthening his back and neck muscles.

Kay said that Daryn is now trying to feed himself and doing pretty good at trying to get the utensil to his mouth. He is still having some trouble sleeping through the night but it seems to be slowly improving. Kay feels that she has seen a big difference in Daryn from 10 days ago.

(Today is another little Krabbe child's birthday - Dillon we all wish you a wonderful and fun filled birthday!)

Keep those prayers coming!

Cindy

Wednesday, October 8, 2003 10:17 AM CDT

Hello everyone...it has been a while since we have updated. Daryn has had some highs and lows but seems to be doing better now. He is fighting conjunctivitis and has been running a fever so the doctors have put him on antibiotics. The family was informed that Daryn won't be going home for another 6 to 8 weeks. This is a disappointment but better that he is near his specialists if they feel he is not ready to go home. Grandma Kay and Aunt Jannel have been taking turns staying with Theresa and helping with Daryn's care. He is still having some trouble sleeping at night and this in turn affects everyone else's sleep...so the extra hands are very welcome at this time.

Daryn also became a celebrity at home. One day before a fund raiser someone vandalized Denny's Hair Salon who was collecting money for Daryn and took his donations. Local TV station Channel 4 came out and did a heart warming story on him and the donations came pouring in to help restore the money lost. We are happy to say that we have received over $3000.00 from these generous souls and wish to thank them all for their donations.

We would also like to thank Erika Sears and her family for donating the Kidcart that their daughter Haley (now an Angel) had used. We feel blessed to have such generous people in our lives.

We would also like to extend our deepest sympathies to the Prichard family for their loss. God now has a little Angel named Noah. You will be in our prayers.

Monday, September 15, 2003 5:27 PM CDT

Daryn is doing very well. He is eating now and hopefully he will be able to go off the TPN (IV food) completely very soon. The doctors are lowering his medications also. He is only going to clinic three days a week now so that makes it a little easier on Theresa. If Daryn continues to do well, he will be able to come after his 100 day evaluation which is on October 17, 2003.

Daryn has had lots of visitors since he went down to NC. Grandpa Carnie, Aunt Janell and Uncle Jeff, Aunt Heather, Jennifer, Paula, Betty, Grampa Hopper, Big Mike, Special Nurse Jamie, Great Aunt Don, Great Uncle Chuck and Scott (all the way from Colorado) and Grandma Kay. Daryn was happy to see his family and friends and gave them big smiles, especially Grandpa Carnie.

Chief Pontiac Post #377 American Legion, Auxiliary and Sons of the American Legion had a fund raiser for Daryn on Saturday, September 13th. They raised over $3,500.00 for Daryn. Friends and family along with legion members from all over Oakland County came out to support Daryn. Theresa and Daryn really appreciate all the help and support from these great people. Please continue to keep them in your prayers.

Friday, September 5, 2003 7:59 AM CDT

Hello everyone and sorry for the lack of updates. We've been trying to get Theresa online but haven't been successful.

Daryn is now home (at the apartment). His donor cell count is 98% and he seems to be feeling better. He even smiled and waved goodbye to the doctors at the clinic. Now that is a big deal! He is swallowing better and better each day. He is also eating a little bit better. He still loves his bath time and loves being home with Mom. Theresa says he even giggled the other day when she was playing with him. He hasn't done that sine he was first diagnosed.

Our hope is that by his 100 day evaluation on October 17th, he will be released to come home to Michigan. Let's put that on your prayer list.

Thanks for all the support and prayers!

Thursday, August 28, 2003 6:45 AM CDT

Daryn is now at home (at the apartment) and is an outpatient at the hospital. He still has lab work and blood taken every day.

Her is a note from Grandma Kay:

Daryn's white blood count today is 13. HOORAY!!!

The doctor was talking about putting a tube in Daryn's stomach for feeding. Today Theresa told me that Daryn just needs to strengthen the muscles in his throat so that he can swallow better. Thank you God!! Here is another answer to prayer.

More later, Kay

Wednesday, August 20, 2003 8:20 AM CDT

This is the latest on Daryn from Grandma Kay:

Daryn's white blood count on Monday was 1.6 ANC 1600 and yesterday it was 1.8 ANC 1500. YEAH!!!!!
He will be going home from the hospital on Monday, August 25. YEAH!!!!!! Again.

Monday, August 18, 2003 7:43 AM CDT

Hello everyone -- hope all of you have power now. I had dinner with Kay on Saturday and she was so excited. DARYN HAS ENGRAFTED!!! That means that within 10 days he should be going home to the apartment with Theresa. He will then begin outpatient care, which means he will have to return to the hospital daily for blood work and other lab work. But this is very very good news!!!!!!!

Stay tuned for more updates. Now that Kay is back she may be updating you daily on the web page. Keep checking.

This from Kay yesterday:
God is answering prayers for Daryn and Theresa everyday. Yesterday (Saturday) Daryn engrafted. His white blood count has been 1.6 for 3 days and today it is 2.3. His ANC level has been over 1000 and today it is 1650.
Grandma loves you both very much and misses you lots.

Thursday, August 14, 2003 2:02 PM CDT

It is 3:00 p.m. and just talked with Grandma Kay. She said that Daryn's white blood cell count has doubled today to 1.6 from .8 yesterday. Also, Daryn's ANC count is over 1000. THIS IS GREAT NEWS!!!! It won't be long and Daryn will be living at the apartment with Mom and having a little bit of a normal life -- possibly with some time in the pool!

Theresa and Kay are so excited. Kay said that Daryn was a little fussy today, but this could be because his little body is working so hard to make new cells.

Thanks to all for the great support!

Thursday, August 14, 2003 7:31 AM CDT

I spoke with Kay (grandma) and she says that Daryn's white blood cell count was 8 yesterday. His ANC count was 488, this count is apparantly his total blood chemistry. When this count stays at or above 500 for three days consecutively he will be released. That will begin his outpatient care. They also changed his medication they took him off the Adavan and put him on something called Baclafen (this spelling may be wrong).

Thanks for all your support and prayers.

Tuesday, August 12, 2003 9:52 AM CDT

Talked with Grandma Kay today. She said that Daryn's count (white cell) has been 5 for the last two days. They have not been in yet today to take the count. She said that Daryn had a restless night but does really good once he has gotten his meds.

Paula, Mike and Betty arrived for a visit and they are helping to give Theresa some R&R while taking time with Daryn.

Also, just a heads up that we have another benefit coming up on September 13th. More details to follow.

Monday, August 4, 2003 10:31 AM CDT

Daryn has been joined by Grandma Kay and other family members this week. Theresa (mother) is encouraged that his count has been in the 4-6 range which keeps the doctors very happy. Daryn is experiencing some bone pain due to the grafting, but even this is good news.

Grandma says he has been giving her high fives and even teased her a couple of times. He seems to be smiling more!

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