Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: May 14, 2002

BMT + 42

Kathleen and I were very happy to get some smiles and giggles from Robert yesterday. He also told us “no” a couple of times. Most of the time he is not very responsive, however. He is still not talking, and he is clearly uncomfortable much of the time. At least part of this is because we are gradually reducing his pain medication, and Robert is going through drug withdrawal. Robert is continuing to make progress on his breathing. He now needs very little oxygen to keep the oxygen saturation high in his blood. His lung X-rays also look normal.

The MRI results were mixed. The good news is that there is no evidence of brain damage from Robert’s heart failure or seizures, and there is no sign of infection. Also, there are no problems with his cervical spine or any compression of his spinal column. However, there are changes to his brain since his last MRI in August that may be caused by treatment or by his illness. There is also some indication of hydrocephalus (extra fluid in the brain). He will probably have a repeat of his spinal tap today to see if the cerebrospinal fluid pressure is still high.

We have begun feeding Robert a little bit through a tube again. His stomach has not tolerated this too well so far, but it will take a while for this to be normal since he has had colitis and had so little food for the last six weeks. His liver functions are still not so good, with bilirubin and GGT up again.

We are so grateful for all the family help. The other children really enjoyed having Aunt Mary here this weekend to take care of them, and we really appreciated the extra help. Of course, so many of you have been helping all this time, so we just wanted to let you know how much we appreciate your help and prayers.

Best regards,

Mark

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