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Thread: Prayers needed

  1. #71
    Walking on Sunshine

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    An update on my grand nephew from my niece
    Her last update was in Feb to the family - my how time flies!!
    Quick recap:
    • Grand nephew pulled his NG-Tube for the last time - they've just increased his calories/bottle instead of getting another tube.
    • They celebrated his 1st birthday with a Facebook Live event. They had strawberries & whipped cream instead of cake, since he wasn't really eating solids just yet.
    • He graduated from breast milk/formula to Pediasure.
    • March was pretty uneventful (unless you count all the SNOW they got!)
    • They celebrated Easter weekend at home (in the snow)
    • He got a new car seat because he was almost at the max height/weight for the infant carrier.
    • He developed GVHD pretty bad on his hands/arms and feet/legs with a little on his chest/tummy at the end of March & beginning of April. As a result, he started on Prednisolone (oral steroid) and a steroid ointment for the rash.
    • The steroids made him SUPER cranky/inconsolable quite often. Grand nephew now has 10 teeth, including 4 molars.No wonder he was cranky LOL
    • He saw his speech/feeding therapist on April 19th and she was VERY happy with his progress.
    • On April 27th, He had surgery to remove his port. Since then, Niece thinks has he's doing EXCEPTIONALLY well. He's no longer inconsolable, thanks in part to weaning the steroids, his molars are finally finished coming in, and now that they know that hunger can be another side effect of the steroids (they'd been keeping his bottles at 4oz each, not realizing he could take more comfortably).
    Twice now, he's been able to take 5oz of solids (stage 3, w/ chunks) in a sitting, with about a 3oz bottle afterward. If he can continue with the 5oz solids, she thinks she's going to cut back on the bottle after, to only 2oz, and see how he does. They've been giving an 8oz bottle before bed, and that has really helped so he's not waking in the middle of the night anymore! If he's too fussy/tired before his nap during the day, They've been giving him an 8oz bottle before his nap too (he typically only has 1 nap/day, around 12-2pm), and that seems to calm/satisfy him. He's been averaging over 20oz/day from bottles for the last week. Her next feeding goal is to transition him fully to solids, with only the occasional bottle.
    His GVH rash is looking much better, in her opinion. Tomorrow(Monday) his Prednisolone will be going down to 0.9ml/day and he continues to get the steroid ointment 1-2 times/day.
    They will be in Boston again this Wednesday for Ophthalmology with Dr. , for clinic at Jimmy Fund, and OT at Children's.

    Next Saturday (May 12th), they will be hosting a birthday party for Big sis and he will officially be off isolation (Finally!!). Niece expects him to be napping upstairs in his crib during the party (we'll see, lol) and will ask everyone to take off shoes & please use hand sanitizer. She will also be putting his toys out of reach from their little guests, just to be cautious. She has included a note with the invitations to let everyone know he would be just coming off isolation and the request for shoes and sanitizer, so she doesn't expect any problems.
    She says "I'm looking forward to finally being able to go to the store without having Daddy stay in the car (or at home) with baby and sister, and finally being able to go out to dinner as a family! And NOW grandmas can come and visit. I know my sister is chomping at the bit to see her newest grand baby.
    Thank you all for the support and prayers. It means a lot.

  2. #72
    I'll most likely shit myself


    bacpacker's Avatar
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    AWESOME news all the way around.

  3. #73
    Walking on Sunshine

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    Thank you Yes it is really great news. Here's hoping he continues to do well.

  4. #74
    Walking on Sunshine

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    Got an update, niece reported that gr nephew is having some problems with the sunshine. She says the sun is now bothering him to the point he needs to have baby sunglasses. She contacted the doctors and they want to recheck his eyes and see if the nerves are really healing. They believe that a side affect of the transplant maybe healing the optic nerves and he’ll be able to see more than shadows. Keep the prayers going, they are much appreciated. He is growing like a-weed and so far so good health wise. He is a very happy baby for the most part and his sister has been wonderful helping mommy and daddy take care of him.

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