May 26th, 2009.
We were at the hosptial for a long time (noon to about 530)
We had appts with a nutritionalist, a physical therapist and the neurologist, Dr, Wong.
Got some general information about nutrition and some PT he can start now. The PT lady was more concerned about him getting PT for his walking delay, not for the issues associated with DMD. She said his motion is great, so the DMD not a factor yet. Great news. She said we should get him into PT to catch up for others his age, then more PT down the road for the DMD.
Dr. Wong had so much information for us. She says his weight is a issue, but not related to DMD. She ordered some blood tests to help determine if there is anything serious causing the weight problem. She's concerned about size of head, the fact that his soft spot is still open and that his eyes "sunset" (which means you can see the white above is pupil). None of these 3 things I just listed have anything to do with DMD. She said she would send a request to Wyatt's primary doctor to have him refer us to Children's Seattle. I'm glad she's a neurologist, she knows all things brain, not just DMD. She did also say that since there is a family history of seizures and since DMD is a neuromuscular disorder, that seizures are a possiblity for Wyatt and I need to keep an eye on that. (CRAP, I hate seizures)
May 27th, 2009
So far today. We went to hospital at 8:00am and they took a bunch of blood for tons of tests. (glucose, Q10 level, CK, etc. all over my head) Then at 9;00 he had an Echo & EKG (heart tests). We also found out that Dr. Wong didn't want to wait until we got home to get the big head, eye thing checked out, so she wanted him to have an MRI, but Radiology couldn't do it, so he is having a CAT Scan at 12:30 instead. Depending on what the CAT scan says, we might be doing more tests, but I don't know. We have a couple more appts. later today, I'll keep you posted.
We went to meet Alex and Leslie
May 28th, 2009
Today was a crazy day. We got to the hospital at 8:30. We met the dietician again, an endochronoligist and a counselor.
Dr. wong came in and said that the CT was normal, but she's still concerned. Fluid in the brain would be an emergent condition, so thankfully the CT ruled that out. However, now she's concerned not only that Wyatt has DMD but that there is a separate not related genetic condition that he might have.
When we get home Wyatt has a well child check on the 11th and Dr Wong sent me home with a list of stuff that she wants our primary doctor to order. In addition, she wants a MRI/MRS test done to check his actual brain tissue. Enough is enough already, this poor kid.
The counselor told us it was our decision on whether we want to continue with all these tests, seriously at this point how can we stop. She meant well, but she wasn't thinking realistically. The care we got at CCHMC was amazing. We, in just 3 short days, really understood why families are flocking there.
I love the genetics counselor at Seatte, but everyone else in Seattle really don't compare to CCHMC. They care about Wyatt sure, but they don't truly want to put out all the stops for him. Dr. Wong took and picture and a video of wyatt so she could remember him. She remembers every patient, she's incredible. She is aggressive, but not fanatical and that's exactly what we want. She will leave no stone unturned. She did a complete exam, she didn't just deal with the DMD she is dealing with the weight too, which Seattle was passing the buck on.
The Echo and EKG they did were also normal. The Cardiologist said that she will need to see Wyatt back in about 2 years to do another series of heart tests, but right now everything is fine. (Great news!)
Speaking of going back, looks like we are going back in 6 months unless the MRI & MRS are weird then we may go back sooner. But 6 months for sure. After all the questions about Wyatt are answered then we will go once a year