We just saw Dr. Borchert here this morning who informed me of something we had a feeling was happening. Ian has very little vision out of his right eye. He also has strabismus (crossing of his eyes) which will eventually need surgery. To get his eyes ready for optimal results of the surgery they need to both be seeing the best they can. In order to do that we need to alter the left eye in a way to force the right eye to become stronger. There are two options, put a patch over his left eye 4 hours a day, which he would be sure to rip off as he demonstrated this morning. Or put a drop in the left eye which will blur that eye's vision and make the right eye do the work. He suggested the later. Although that's not going to an enjoyable undertaking either. He told me the tricks to make it as easy as possible. Do it while he's sleeping (which I can't imagine working) and warm it up so it doesn't burn. Trick is to not get it in the other eye. It works for 24 hours so if I do he'll be off for that day. We'll see how it goes!
On the progress front, he's been making great strides with fine and gross motor skills. We really feel he will begin to walk on his own soon. I'm thinking by his 2nd birthday in March. Not really progressing with speech but that will be another post.
We've been able to cut his Sildenefil to 2 doses a day instead of 3. Same amount per day just more of it in less increments. Finally no midnight meds!!! Yea! Not that he's sleeping well anyway but at least if he does we don't have to wait up or wake up to administer that med. And, even while sick, we saw Dr. P a couple weeks ago and he said his lungs sounded much better. He changed Lasix from 2x a day to 1x. We haven't implemented that change because we wanted to do one thing at a time and wait until he was healthy again. But it is HUGE if Dr. P feels he can wean something. He's extremely conservative and never really uses the word progress when relating to Ian. We'll see what he says today.
Overall I'm tired and, as usual, feeling a bit overwhelmed. Of course the two are related. Ian's sleeping is off and on. I keep thinking we are ready to wean him off any milk at night so maybe he'll sleep through (which he grants us on a very random basis) but then I worry about his heart and his overall state of emotional health. I will discuss it with his cardiologist. We've been giving him Melatonin per his neurologists recommendation to get him to fall asleep in under the hour or two he normally takes. But last night nothing worked! He was up from 2-6:30 or so. Puts Mommy in a very edgy state ;-) Especially when we have had 3 days of therapy and appointments from morning to night.
All this while trying to still be a good Mommy to both Ian and Lila. And trying to navigate where Lila will attend school in the Fall. As well as trying to be supportive to my over worked, over-tired, stressed out, wonderful husband.
But then I think of how good we really have it. We attended a birthday party of another little guy same age as Ian whom also has PMG. He's having a really hard time, as are his parents. I feel awful for them all.
Sometimes I feel my "payment" for how well Ian is doing is all the thugs we need to do. The meds, therapy, supplements, breathing treatments, oxygen, his teeth issues, doc appointments and now these drops. Maybe I'm just being tested to see how much I can deal with and still remain upbeat ;-) Being here at CHLA always puts everything in perspective, that's for sure. We have it easy. That needs to become my Mantra.
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Shari Abercrombie Photography
http://www.shariabercrombie.com
310.699.7621
ugh. . .know exactly how you feel. seems whenever we get a little progress, it comes with a few setbacks. but i agree that visits to CHLA help put it all in perspective. xo
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