Thought I'd let you all know how the grand nephew has been doing. Thank you all for your continuing prayers and thoughts.
G nephew's development is really starting to take-off! This past weekend was awesome, and they think it's mostly due to him coming off the Clonidine patch. His blood pressure has been steady for a while, and since they are weaning the Cyclosporine now, She was told they could stop that med. Niece took the patch off Friday night, and Saturday he was going full-steam awake for about 9hrs!! They did tummy time, rolling, sitting, solids, even played with big sis a little too. One of the side-effects of Clonodine is drowsiness, so they guessed he just had a lot of reserve energy to use, lol. Unfortunately, he's been having some withdrawal symptoms - vomiting (about twice a day), and a little jittery. Fortunately, Niece think the withdrawal is slowly getting better.
They finally have PT setup thru Early Intervention, and like OT, they plan to come once a week. The first session was Thursday, then they saw her again on Tuesday before heading to Boston. She was very excited to see his progress from only a few days - Niece really does think that stopping the Clonidine helped to "wake" him up a bit - he's so happy, smiling, and playful now They also saw OT and the Vision teacher on Monday and they too were excited to see his progress. OT comes once a week and the Vision teacher is planning to come twice a month.
Upon arrival at The Boston House on Tuesday night, Niece discovered G Nephew pulled his tube en route *sigh* naughty boy
He had a FULL day of appointments, starting with Ophthalmology. They were able to retake the test where he looks at a screen with black & white stripes while they measure the signal from his eyes to his brain via electrodes attached to his head. He did MUCH better this time (last time they weren't able to do the test because he was too tired/cranky) ... good news - his light perception has gone from "maybe" to "yes", even better, they say he MIGHT have a little pattern perception! She's scheduled a follow-up in July.
Next, they went to Clinic for labs, and to finally get his Synergis shots (to protect against RSV) ... VT Medicaid really made them jump thru hoops to get it - originally, they wouldn't allow Boston to give it to him, then they wouldn't let Dartmouth give it to him - they insisted it be given by his PCP ... the PCP was finally able to get the meds special-ordered because it's not something they normally give. They had it mailed to niece and nephews house, so they could bring it with them to have it administered ... well, since they don't normally give this shot, they don't have "Best Practice" protocols in place for it, so they needed to bring it to either Dartmouth or Boston to have them administer it. She finally decided to just bring it with them to Boston, so he got that during Clinic.
All his labs look great! Dr said she is extremely pleased with his progress and says he's "perfect" ... of course, Mom has to agree ... he also got the NG-Tube replaced, unfortunately. When Niece mentioned the thought of seeing how he does without, Doctor said he's not ready for that yet because 1) he's not finishing all of his bottles, 2) he's been vomiting due to withdrawal, and 3) he's not making up much of his calories from solids yet ... Unfortunately, they couldn't aspirate (draw out) any stomach fluid to test the PH, so they had to go to radiology for a chest xray to confirm the tube's placement.
By then, they were running late for his OT appt at 3pm and they didn't get there until about 340pm ... got lucky tho - both OT and PT had their next appointments cancel, so they were able to be flexible with them. As usual,she showed video/pics on her phone, and discussed a lot about his progress - they are ecstatic with where he is right now. PT at home on Tuesday, they were able to get him to STAND!!. Clinic went REALLY well!! They're continuing to wean the Cyclosporine, so he's now down to 0.1ml ... in 2 weeks, they'll go to Dartmouth where they will drop the dose to 0.05ml ... and then 2 weeks after that, he'll be all done with immunosuppression!!! Dr said it will still be another 3 mos after they stop before he's not on isolation anymore. Dr said he's doing so well that his next 2 clinics can be at Dartmouth, so they are not due back in Boston until March 14th!
Thank you all again!