Day 26

Yesterday Tessa sang her first song in over three weeks. It was the first couple of lines to "Happy Birthday". Today she graduated to almost the entire "Twinkle-twinkle little star" song. It's great progress along the memory and speech fronts! She is getting more coordinated manually and can respond to commands. For instance she can put her finger on her nose when prompted. She has been calling out people's names and the list of names is growing and growing. She's breathing terrifically, handling the dialysis quite well and even getting some good sleep at night and the occasional daytime nap.

The latest concern is that her vision seems impaired. To what degree we still don't know. She is not making much eye contact and apparently when playing with toys that one of the physical therapists brought in, she responded to the descriptions of the various squares and triangles and circles with: "I want to see it." That broke Katie's heart.

It's very odd though because 4 or 5 days ago she was pointing out the small illustration of the train in the book "Owl Moon"...one of Tessa's favorite books. It seems that whatever vision she had then does not exist to that degree now. The neurologists and therapists can't really explain it and even think that while and MRI might be able to show an area of damage or compromise in the brain, it probably would not help them understand what's going in terms of Tessa's vision problems.

Still, we do know that HUS can affect blood vessels in the brain and that in the overwhelming majority of those HUS cases, the damages are short term and eventually clear up. If in fact HUS is affecting a part of the brain that is associated with sight, then maybe that will reverse itself once the HUS clears up. We hope that's the case and that when the HUS symptoms/effects completely subside, so will some of these mental and vision issues...but nobody knows if or when.

Altogether, it's a mixture of uplifting progress on several fronts but tempered by some real concerns about long-term or permanent damage that the doctors are voicing.

We just have to wait and see and hope Tessa does as well.