Today we checked in with Dr. Dirks, Gavin’s neurosurgeon, in clinic. It has been three weeks since Bean’s shunt revision, and he is doing well. I am not sure if the doctor is pleased with Gav or not, I think he is suspending judgement until we have a look at the next scans. We will return to MRI within the month, looking for indicators that Gav’s shunt is now draining too rapidly. If we find signs of this issue, then Beanie will undergo another shunt revision to replace the one he currently has. This means that the next MRI will be more than a month before we are due for scheduled imaging. I have to take this as a good thing as his last scan was over two months late. We cannot allow that to happen again, for obvious reasons.
Gavin’s incision site looks good and is healing, and he is over the nausea and vomiting. He seems to be sleeping slightly more than before but does not seem lethargic. The continuing problem that we are seeing is that his movements are much slower than before, and he seems to be unable to walk as rapidly before. He also can’t run at all anymore, which is upsetting for me to see, as he had made such huge gains in his mobility before our most recent hospital sojourn. Otherwise, cognitively he is back on track, although he is irritable at times. But then again, most two and three-year-olds have explosive meltdowns, so how can we know what “normal” is?
So, business as usual. We are trying to get everything back on track and praying that another revision will not be necessary. I will not get the date for MRI for at least a week. The only other thing that was briefly discussed today was whether or not Gavin’s skull has the potential to grow back at all. One of the neurosurgery fellows believes that we still may be able to see quite a bit of growth, but whether that has been inhibited by stem cell transplant as all Gav’s growth has remains to be seen. Dr. Dirks briefly mentioned getting plastics on board to talk about skull repair, but then backtracked when he saw my face. That is going to be a huge surgery, and I don’t think I can face it just yet. Sensing that, he then decided that we can wait awhile before making any moves, which is a relief.
In so many ways, we have escaped the worst outcomes of Gavin’s disease. I know for some reading this, that is hard to believe. Certainly we have walked a hard road, but we have our lovely little boy with us. He has good fine motor control, and can walk, talk, (that constantly) hear and eat. Swallowing is an issue, his head looks a bit battered, he lacks the grace some of his peers have, but he is still our sweet Bean, gifted in many ways. This evening has been hard for me, as we spent the late afternoon with friends at the park. It is always difficult to see Gavin in the company of little ones his age, and to see how much smaller he is than them, how he doesn’t have that freedom of movement that they have. I have to allow myself a little cry for the time that was lost, and to just accept that there will be a wee envy when I see my friends’ kids running, skipping and jumping with such ease. That time will come for Gavin too, I believe that.
Over this long and rock-hard year that we’ve had, I’ve sometimes asked our world out there for specific good intentions. I’ve asked for no fevers, no nausea, clear and healed lungs, platelets. I’ve asked to just get us out of the ICU. I’ve asked for Gav’s hearing to remain intact. All of those things have come to be. I ask now for this shunt to last. To just be perfect, and last, for years and years and years. I ask for this little head to heal. For his skull to just somehow, miraculously, to just grow back, a little more and a little more each day, as he grows, I hope, a little more and a little more each day.