I am awful. I haven't posted in 6 months. And most of that there is absolutely no excuse for. But the last 2 months have been crazy, and we are finally feeling like our lives have some normalcy again.
Let's see, Grayson (aka The Goof) turned 3 on May 20th. On May 22nd, I had planned to be cleaning and packing to go to my friend Sarah's wedding that weekend in Salt Lake. His pediatrician called and asked if we could come in that day for his 3 year check up rather than waiting a week for when it was scheduled. I agreed, thinking it would be nice to get out of the way.
So the stats, before I get going- he weighed 25 lbs even and was 33.5 inches tall...he has since gained 1 pound, but more on that later.
During the exam, we talked about the bloody noses Grayson had been having, which we had seen the doctor for already. We also talked about how he was brusing easily. Not just easily, but in weird places (inside his ear). And the bruises wouldn't fade.
We were sent for blood work. By the end of the night, Grayson was in the hospital. His platelet count was next to nothing, and he wouldn't be allowed to travel. Because he is so active, we tried IVIG treatments to raise his platelet count. At this point, cancer was ruled out based one red and white blood cell counts.
Grayson was diagnosed with an auto-immune disease called ITP. While when you google it, you will probably find it is often brought on by a virus, etc and children bounce back, that is not the case for Grayson. He is now officially diagnosed with Chronic ITP. So far, we have not found a treatment to control it (no, we are not trying to cure it, just control it). We have done steroids (which make him a holy terror and eat a tone, hence the 1 lb gained over this last 2 months), IVIG, and a Rh type treatment. A few have seen an initial response, but then his numbers fall back down. On top of that, he has weird things come up all the time on labs, and then disappear. It has been crazy. We have done bone marrow tests, stayed in the hospital, have weekly(or twice weekly) blood draws, and more. It has been crazy. But we finally feel we are back into a new normal. This is our life. It doesn't stop us from living, but it does change how we live. We don't do a lot of super active stuff, we don't plan anything "for sure" until the day we do it, and we know that every day could mean a doctor visit, or even hospital stay.
I have learned to appreciate facebook. It has helped us keep family in the loop. I have a large family, too many to call and text them all with updates, so facebook has helped with that.
I have also learned to appreciate that Grayson's health is basically pretty good. We go to the MSTI center, and seeing all the kids battling cancer and going through chemo is heart breaking.
Anyways, that is my little update. Sorry the blog has fallen behind. Thank you to all who have given love and support.
