Prayers needed

[Katrina]

Thanks BP Appreciate it.

[Katrina]

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!

[bacpacker]

That is a fantastic report Kat. I'm so glad to hear all the good reports. My prayers continue.

[Katrina]

Thank you bp . We are glad he's doing so well. He's still got a long ways to go We're are keeping our hopes up that he'll be "catching" up once he's off the isolation protocol. I know both grandma's are anxiously waiting to be able to see him in person instead of phone videos, LOL.

[eagle326]

Haven't kept up with thread due to life issues here. Reading all of your updates brings joy to me for the little guy. As River Rat said ; He's a tough bugger and there's a reason he's doing well with help from the big guy above.
I really hope the vision returns better than expected and just reading your updates he seems to be one who will stand on his own and prove to be one heck of a fine person with all the family support he's getting.

Just know that all of us here at the ant farm hope & pray for you ; him and family .

[Katrina]

Thank you eagle and everyone here.You are all very much appreciated.

[Katrina]

Quick update ,he's off the feeding tube right now and starting to eat solid (aka mushy) food and they've taken him off another of the meds.My grand nephew has 6(count'em) 6 teeth now and is on almost all formula. He is looking so cute and he still has all the hair on his head, just the fuzz on his arms and back is starting to go away so our fuzzy wuzzy isn't so fuzzy now. He is working on sitting up and rolling over, lifting his head and has a very happy disposition. thank you all again for all your prayers
Sorry haven't been on for awhile just got back from taking care of DIL1 and grand baby.I believe the surgery took this time as I "made" DIL follow the doc's instructions TO THE LETTER (LOL)The little one is teething and was a bit unhappy that Gaga(me) went home. Got a call last Sunday and heard ALL about it LOL She loves "talking" on the phone. When Daddy is working late she face times with him before bedtime.

[Katrina]

Hi all Got some great news on grand nephew. He's had surgery to remove the port(for meds) AND he is being weaned off the GVHB drug. That's the one that has caused his rashes. He's doing much better he has about 9 teeth now and he's able to pull himself up and sit. In fact the doctors have given niece permission for 1-2 of big sis' friends to come over for a small birthday party for her 5th birthday but it can only be for 2 hours max. It isn't much but at least she'll have a bit of getting back to normal. Of course lil bro will NOT be attending so dad's going to be upstairs with him til the friends leave. Niece is a stickler following the doc's orders and the moms understand this. Thanks again for the prayers and good thoughts Hopefully they will be able to get back to as normal of a life as they can.

[bacpacker]

That is AWESOME News Kat. I am so glad to hear this. We will keep the family in our prayers that things continue to progress.

[Katrina]

Thanks bp, we have been pulling for him. Niece keeps updating as much as she can. It's a good thing he's been a pretty happy baby but with all the molars starting to appear,he does get a bit cranky LOL.