the 24th and drawing blood on the 26th we were together :) loving each
other and I am happier and fatter for it !!
His grandparents were with us for two weeks before Christmas and his
Nana has come now after Christmas- he finds them so much more
entertaining than us.
The update on my lovebug has us driving to see his GI specialist today.
We have a good feeling about it.
Through the holiday period and another Hospital stay we ruled out
leukemia, lymhomas, and lots of bad things. That is a blessing. Those
prayers are helping :)
We are thrilled so many things have been crossed off with endless
blood work, biopsies, swabs, PET/CT scans and MRI's.
He still has this fever at different points everyday but it does not
stop him from wanting to laugh and play, so all any parent can do is
press on and continue with the best care and love humanly possible.
We have received so many amazing and really heartfelt letters from
folks across the country and down the street and I am doing my best to
respond to all of them. It may take a bit, but please know that I am
reading them all! Many parents are/have been in similiar situations
as to us and know that my prayers include you as well. There is
nothing wrong with praying for each other :)
I daydream sometimes about when Colin was born and I went outside for
the first time, how everything seemed so different. It was brighter
and honestly somewhat amazing. I try and remember that as our daily
struggles place their weight upon us, that being a parent has no real
manual and when your child is sick so much of the world really fades
away. That is ok. We are ok. He is in the car seat next to me as his
mommy drives and I watch him rub his tired baby eyes. (someone refused
a nap today)
He is going to get better and we won't give up! And one day in the not
so distant future he may even eat a piece of broccoli. I know, I
know....but it never hurts to hold onto a dream for just one extra
breath. That might just be the extra push it needed to fly.
3 comments:
I'm so glad about all the things they've been able to cross off the list. I'm sure the doctors are close to figuring it out and I hope it turns out to have a fairly simple solution.
take each day at a time Valentine. That is my best advice as a parent. It's when they are so little that we fret the most, but we have to remember the kids are better troopers than we think they are.
Hi Valentine,
I'm the mother of 3 (24,21 and 17) and you are absolutely right that when your child is sick the rest of the world fades away. Even though my kids are older the worrying doesn't stop. I'm sure one day soon you will look back at all this and think how did we get through it. All you will have to do is look at his smiling face and is unconditional love and you'll know.
I'm sure you get a lot of emails with different diagnosis but I thought I would share my story with you just in case it hasn't already been mentioned. A friend of my son's was getting low fevers everyday about 5 years ago. They ran a lot of the same tests and thankfully they to came back negative. Finally, after several months of missing school and having these fevers he was diagnosed with Crones. He really never had the classic symptoms stomach pain or diarrhea just low grade fevers and he was a little more tired than normal. I don't know if they have already tested Colin for crones but I thought it was worth mentioning. It is also worth mentioning that Billy is now a sophomore in college and is doing great. Once diagnosed he was treated with oral medications (prednisone and MP6) but after a couple of relapses he started an out patient IV treatment of Renicade every 8 weeks and is doing great.
If you have any questions and if we can be of any help please feel free to contact me.
Best of luck to Colin and I will keep you and your family in our prayers.
Cathie Fortmann
Post a Comment