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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.

  5. #75
    Walking on Sunshine

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    Sorry I haven't been around. Just got back from 2 mths in the the South. Took care of 12 yro whinny going on 30 grand daughter , 11yro nose stuck in his phone grand son and VERY ACTIVE 15mth old grand daughter,whose FAVORITE (only) movie is Moana. (You're Welcome.) Had to come home to recuperate. Hey if any of you watch Antiques Roadshow, look for the Detroit show next year. I won tickets and DH went with me. Took my Christmas ornament and a couple of my mom's bracelets, he took a couple of toys. Found out moms bracelets are from the 1890's and are real gold, we all thought they were 1940's costume jewelry. The ruby and diamond shoe clip from my dads mom was as we suspected ,fake, but if I had the pair, worth about $150. My ornament is the real deal and is about 115 years old from Germany. I did the feedback booth, was a bit of a smart alack. Size did matter but the color of the ball matters more. Said to sisters Sorry guys Mine's worth more TEE HEE. DH took my wooden figure from Italy and his number balance scale. Dad brought the figure back from Italy/Germany when he was stationed there Toy guy said it was about $25. DH's toy scale was worth about the same Sorry Honey.
    Forgot to add this Niece posted this today:
    Lord I'm getting senile LOL
    GREAT NEWS! Noah's vision teacher came today, and she is AMAZED by the improvements in his ability to see! She says he DEFINITELY has more than just "light perception" �� ... can't wait for his next opthamology appt in Boston! It's not until September, but I'm going to check with his transplant team to see if they can get us in to see someone during our next trip to Boston for his 1yr checkup, next Wednesday
    Last edited by Katrina; 07-25-2018 at 02:01 AM. Reason: Forgot to add

  6. #76
    I'll most likely shit myself


    bacpacker's Avatar
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    More great news

  7. #77
    Walking on Sunshine

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    Sure is. They are off to Boston Children's soon, we'll have to see what the Docs say though. I hope to post more (good) news soon

  8. #78
    Walking on Sunshine

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    Well We got some good news the other day. Grand nephew is still tracking objects with his eyes. His PT nurse says while he's still behind in some developmental things he is almost up to age on other things. Niece goes to Children's hospital next month for his check up(one year out from transplant) and has appt. with eye doctor to check on his optic nerves and to see how much he is seeing.Very hopeful there is more improvement. He is sitting up by himself and getting vocal. He is growing like a weed , had his first haircut last month. The meds have him looking like a little werewolf, LOL. A HUGE thank you to all for the prayers and encouragement. Niece says he is now eating more solid foods so that is good news too as there was some concern he wasn't gaining weight like he should. Their cat has been his "bodyguard" when he's on the floor for tummy time. That is to encourage him to roll over, lift his head and try to scoot around.

  9. #79
    Bacon saver
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    OK I'm back up to speed, sounds like the wee one's doing well. Been "detained elsewhere" the last few months. You guys are still on our list of many prayers. At's cool about the road show!
    Be safe.............the night is your friend.

  10. #80
    CC Gray Panther
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    Great news ; keeping him in our thoughts and prayers.

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