Creed

Creed is one of our precious little friends

who was born 11 weeks early weighing only 2lbs.

His mom, Stephanie is such an amazing woman, hilarious and STRONG!

Here is Creed's story in Stephanie's words:

During his stay he was diagnosed with an adrenal gland problem, with no real idea of what it was. He finally joined us at home after 91 days and stayed home for about 90 days before heading next door to Scottish Rite 1001 Johnson Ferry Road. He was taken there because after weeks of battling feeding issues, mommy was defeated and didn't know what else to do. We were told then, that he had adnoviral pneumonia. During his stay there, we worked very hard on getting him to eat, but he was one strong willed little boy and refused. We came home with a NG tube (a tube that goes from his nose to his tummy) and that's how we feed him for the next 4 weeks. (That stay was 21 days) After having to replace the tube several times a day, we asked for a tube to be placed in his tummy instead. Two weeks later, yep, back in the hospital again with salmonella and sepsis. That trip was 6 days. Home for two days, then back again for dehydration, just 2 days in the hospital this time!!

Three months after that, Creed was scheduled for surgery, which was the first of three. While being put to sleep we had the tube in his tummy changed to a button...a more long term device used to feed him. A month went by and we found ourselves back in the hospital, this time with respiratory distress. One of the scariest moments we experienced...almost had to be placed back on the vent. Three days this time.

4 months later, we're back...this time stomach virus/hypoglycemic. 4 day stay...Oddly enough he was scheduled for his 2nd of 3 surgeries the very next day. So we went home, spent the night, and came back the next morning for an overnight stay.

We almost made it two months before our next illness, which was Kingella, an infection in his subtalar joint, and anemia. That was a 15 day stay!! 5 weeks later.... back in with Adenitis/Cellulitis in his arm/oral thrush. Just three days this time. So we started on our next healthy stretch and did pretty good for about 3 months. Nothing really big this time, just fever/vomiting... an overnight sleepover. This started another little cluster of visits. He got pneumonia a month later and stayed for 5 days. Home 2 weeks and then back again...with pneumonia, and yep...5 days again. Pneumonia was his illness of choice for awhile, then he changed to kidney infections.

After being home for 7 months, Creed went back in for 10 days. E coli/kidney infection/anemia. Home for almost a month then back again with his second kidney infection, 2 day stay. 9 months home...woo hoo!!! While we were having our little hospital break, Creek went to the Marcus Institute everyday for 8 weeks for 8 hours. He went in totally tube fed and after 8 weeks came home eating all by mouth. No more tube!!!! He had a surgery to close the site where the button one and has never looked back.

Then grrrrrr.....another kidney infection got 'em. This time for 13 days. A surgery was scheduled then for a procedure called de-flux. This would stop the reflux in his kidney's causing the infections. All was well after that for 8 months and he got a virus that caused fever/vomiting. Just three days to rebound from that. We all got really excited about this next run of healthiness.

He made it 11 months without going to the hospital. We all thought that maybe we were finally finished with all this craziness. Not so much....back to visit, our friend pneumonia/shock/sepsis, 6 days this time. Home for a month and back again, E. coli, hypotention/sepsis/low potassium, 6 days there again.

2 weeks at home and the ol' fever/vomiting bug returned and kept us there 11 days. This is when one of Creed's doctors said enough...(please know that during each of these stays test after test were being ran to try and figure out why he continued to get sick) and would not let us go home until we got to the bottom of this. He requested a bone marrow biopsy.

After all the blood test ran over the years he felt like whatever was causing this had to be in the bone marrow. So during that 10 day stay, Creed had a bone marrow biopsy and after we came home, we found out he had monosomy7/myelodysplasia. FINALLY!!!!

5 years later we know why all this has happened. We met with the bone marrow transplant team at Egleston and were told that a bone marrow transplant is the only cure for this disease. While in the process of getting all the i's dotted and t's crossed, Creed was sick again. Pneumonia again and 2 days later he was home. He spent 2.5 months at home before his most recent visit in May for fever/vomiting. That was just a 3 day stay and the last as of this posting.

Creed's little life has been a hard one to watch. As we continued to see him go in and out of the hospital and watch his tiny body fight so hard. His spirit and courage is something I could only wish for. He is my hero and I'm glad to be the chosen one he calls mommy.
As we start our next journey, with high hopes for the future, we thank you all for walking beside us and for praying as we go.

I can't imagine how tiring, frustrating and saddening

this would be to see your child so sick

and constantly in and out of the hospital.

I'm hoping this blog post will help Stephanie in one small way.

"Creed Bands" are here!

There are 2 sizes - adult and child -

and quite the bargain at $2.00 each!

The money raised will be used for parking, gas, meals and other expenses related to Creed's bone marrow transplant. And this is a great reminder to pray for Creed! If you would like to purchase one, please let me know!