Friday, August 20, 2010

Not much to report.

Tomas is holding steady waiting on appts. and testing. He did see hem/onc this week and his ANC is a stellar (for him) 967. That is almost enough to meet the pediatrician's guidelines for taking him out in public. I stretch those guidelines a bit though, usually over 800 and we don't have any issues. He sees GI on Monday and I am so anxious to finally hash things out with someone whose willing to listen.
I was hoping it would be hematology but the "not his doctor" doctor was the one who saw him. This was after I confirmed that it would be his regular doctor when the office called with my reminder. The doctor who saw him is competent and kind, but the one I've been trying to see (she followed him in the hospital in June for the febrile neutropenia) is the only doctor we've come accross who seemed determined to get to the bottom of whatever is going on. The other doctor did say that it would make sense to test him for a metabolic disorder that does match a lot of symptoms Tomas is having, but that it would need to be done by Endocrinology. The problem with that is the current endo group feels that disorder is "inconsistent with Down syndrome". Hema said that may be true but it is not incompatable with DS. The new endo group can't see him until mid-October. So if GI won't test for it that leaves Tomas on hold until then. Not a terrible place to be, but answers would be nicer. Hell, at this point progress toward answers would be nice.
As I was checking out with hem/onc the receptionist asked if I had a preference for which doctor I saw. I told her I had been trying to see Dr. X for the last 3 visits but it doesn't seem to be happening. Later that day she called and explained that 3 families showed up at once for appts and rather than have me wait, the other doc saw us. She also said Dr. X apologized and a note was put in my file to only see her. I can guess what that note says all right!
The blood in his stomach is almost gone, just a tad here and there. I am back to feeding into the G after giving his stomach a break by using the J port for a few days. He has some recurrent cold sores coming out on his lip, they flair and fade and repeat, but hem/onc said with his ANC so strong they would not do anything about it right now.
I don't normally write about developmental milestones simply because with everything else going on they take such a back burner. He does what he does when he does it and we clap and cheer and move on. But, we have been working on something with his OT for a while now and he can finally do it - and for me it is a huge one. Ready?
He can put his pacifier in his mouth all by himself!!! As in, I'm taking a shower and he is in his crib and whining because the girls are still sleeping, Mike is already working, he is not amused with whatever toys I have tossed in there with him and now he can fish around until he finds a paci and he can put in his mouth and settle himself down. Massive accomplishment as far as I'm concerned.
These are his two favorite people on the planet. He even prefers them to me. Sob!.
He has also had some rather impressive cognitive leaps in the last 2 weeks or so. He can sign for ball, more, Olivia, and Victoria. He will put things into a container, point to pictures in a book, and make animal sounds when he holds his toy animals. Granted all the animals say "Baaa", but it is a start. And the tiger and lion are sort of a growly "baaa"!
This all happened so fast that it makes me wonder if the blood sugar swings were preventing him from concentrating before. Super highs, and then crashing lows, and now that they are stabilized with the continuous feeds he shows all this improvement. Hmmm.....


  1. I'm, loving the good stuff! Signing!! Yeah, and the pacifier trick rocks!!!

  2. Hey, self soothing is fantastic! Of course he loves those cute girls, who wouldn't!

  3. I love hearing all the milestones.The things that makes our hearts soar.The stuff that we would take by the bushels full and forget the rest,if we could and sometimes we should.Hard as it is when your knee deep in the unwanted stuff.But here Tomas is,making strides,despite it all.In his own time.

    Still hoping and praying for some answers for your sweet little guy.