Still in our prayers Kat. I am thrilled to hear about his progress.
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Still in our prayers Kat. I am thrilled to hear about his progress.
So are we Thank you.
Niece just posted this about gr nephews seeing:
OMGOMGOMG!! ... Just finished the VEP test, and he's at about 20/60 in both eyes!!!!
From grand auntie YIPPEEE!!! He goes back in November for more tests. He is making progress.
Sorry I haven't done an update on grandnephew but we are very happy. He is sitting up on his own and scooting around on his butt all over the house. Niece has had to put up the gates because he's getting fast. Just have to remind him to lift his head up, he tends to keep his head down. Niece got a contraption that is helping him learn to stand and put weight on his legs, so far so good. He has to wear splints on his hands at night because his fingers are curling but he keeps wriggling them off them in his sleep LOL. As for his sight , cautious optimism, he seems to be able to see a little bit more than shadows so far. He is speaking whole words and can identify people and things somewhat.His sister is very happy he can now play with her (a little bit). She is doing very well too and is a BIG help to Mommy. She had an argument with a tree at school the other day but is okay She has a bit of a scratch on the side of her eyelid but not too bad. I just wonder what the tree looks like LOL.
On a sadder note We are losing one of our cats, Zephyr has developed a type of fast acting lymphoma cancer and there isn't much we can do for her other than helping her cross the rainbow bridge.
Thanks for all your prayers and support.
Thanks for the update. Great news the little guy is making good progress
I bet big sis will take good care of him as they grow up to. Sorry to hear about the cat. Pets end up being like family.
Thank you BP much appreciated.
Wow, great progress.
Tx for the update.
Great news! Hope & pray it gets better in the long run. Keep up the good work Katrina . He seems to be a tough little guy.
Sorry to hear about your cat . Losing a pet is like losing a family member. Their love is pure and given freely with no questions asked.
Thank you eagle. We may down the line get another cat but right now I am thinking I'm done losing the pets to cancer. This is the third pet that has developed cancer in this house in the 18 years we've been here. We've had the house checked out and nothing. Maybe I'm paranoid as DH keeps telling me LOL. A month ago we had to change their dry food as the company is not producing the kibble they both have been eating for the past 8-10 years.Same company but different type of kibble. So I don't know what is going on with the cats.
Niece posted this last night. Grand nephew is sitting up by himself and is scooting around on his butt. He's also learning to crawl up pillows angled on the ground.
Today we saw Son's PT and Transplant doctors in Boston.
At PT, we discussed the tightness of his toes/feet/ankles, and she recommends that we see an orthopedic doctor to get custom braces to help his toes uncurl. We also did a trial of 2 different gait trainers, and she recommends we get him in one at home. The one that seemed to work better is called the Mustang. I know we don't have a lot of room at home, but I'm willing to figure something out - maybe we can go to the school gym or something. We don't need a lot of room initially anyways - until he really gets going.
At his transplant checkup, they found that his Thyroid is low, and because of his feet/toes/ankles being so tight, they think he may have chronic GVH. They've prescribed steroids for the GVH, and he'll start on that this weekend. We're scheduled to come back in 2 weeks, to see how he's doing, but they'll call to check-in next week too. They don't want to keep him on steroids, so we'll see how this goes, and if needed, eventually transition to a different non-steroid medication. They've also mentioned that part of the stiffness could simply be from lack of use, because he still has puffy "baby feet" since he's not using them much yet ...
Next appt is Ophthalmology on Friday morning!
You are all still in my prayers. Glad he is making progress. More to come along the way.
New update today from niece Thank you all for keeping him in your prayers.
• At transplant clinic this morning, the doctors said the MRI came back "normal" with nothing to be concerned about - Yay! :D ... the facial asymmetry/droop is still a mystery tho, so they suggested we see neurology at Dartmouth (to save another trip to Boston) ... so we'll be working on getting a referral for that
• We're weaning/tapering his steroids and they're putting in a new prescription for a different drug to help with his chronic GVHD (the skin/muscle tightness, especially in his feet and hands) ... the drug is called Rox-somethingerother (I don't remember the exact name) ... they said they've had good results with this medication, but it can take a while to start seeing results, like 6-8 weeks just to *start* seeing any kind of results ... they also said that because it's not as commonly prescribed as steroids, it might take longer for insurance to get the prescription filled (one reason we started the steroids asap) ... the reason for switching is because, while the steroids have helped his GVH is the past, we don't want to keep him on steroids for too long ... he'll be on the new medication until it's no longer needed (assuming it works for him) ...
• they're also going to talk to their GVH Dermatologist about a special "steroid shampoo" for his scalp because they are noticing the skin tightness around his hairline, and his hair loss (looks like he has a "receding" hairline already) ... they said that sometimes the GVHD can affect the hair follicles, causing very coarse hair, and even baldness, so they are going to look into a treatment for that as well
• during our previous visit to Boston (2 weeks ago) he also saw PT - she recommended that we see an orthopedic doctor, to get custom braces for his feet, because his toes are so tightly curled ... so we'll be working on getting a referral for that too.
• his next Boston appt will be to check labs (as usual) and see how the chronic GVHD is doing ... that appt is scheduled for May 8th!
I want to let you all know My Grand nephew is in hospital. Niece posted this this morning
"Pneumonia and GVH of the gut - very serious - his heart stopped for several minutes but he's "back" and "stable" for now ... please send positive vibes"
They've intubated and sedated him. Will post more when I hear Thank you in advance for your prayers.
UPDATE:
Niece just posted a vid. He is not getting enough oxygen and he has a blood infection, possibly septicemia. They are still working on him, they may have to transfer him to Boston Children's
Update: So, this is what they're saying he has, and hoping it's not the "HUS" type ...
pediatrics.aappublications.org
Streptococcus pneumoniae–Associated Hemolytic Uremic Syndrome: Classification and the Emergence of Serotype 19A
Streptococcus pneumoniae –associated… She has gone on to say the doctor is worried , he may not survive this. Thank you all for your prayers and support. I will keep updating as I hear from my niece.
I am sorry to report my grand nephew has passed. Thank yo all for your prayers
So sorry to hear Katrina. Thoughts and prayers for you and his parents and all other family members. I really thought he was winning the battle. Cannot imagine out living my children let alone losing them to this.
May all of you stay strong and know that we are all here to help in anyway we can.
Eagle
Run Low Drive On
Thank you eagle it is very much appreciated.
Oh Katrina I am so sorry to hear this. I too thought he was on a major upswing. He had gone thru so much.
My Prayers are with you all you guys.
BP, Thank you. I know they appreciate everyone that was pulling for him. I believe the infection in his blood was just too much for him to combat. I talked to my sister (the grandmom) and she is still trying to get thru to her daughter. She's not sure if they've turned their phones off or the people calling them are clogging up the lines.Thank you guys again.
We're back from the Memorial/Celebration of my grand nephews life. My niece and nephew want to say thank you to all of you for your support and prayers during that time. It really meant a lot to them. The urn she had done was just so beautiful. A friend of hers painted the resin urn and it looked wonderful. My niece sent a picture of the finished urn to the company that made it, they were very impressed, so her friend has gotten a couple of commissions from the company to paint other urns for them. Another friend had pieces of jewelry made from some of his ashes for all three of them as well. We met so many of the people from their little town.They were all very nice and friendly and very supportive. Nephews boss, shut the hardware store down for the few hours of the Celebration, so he and nephews co workers could be there. I'm so glad there are towns still out there that rally behind one another.
My poor sister on the way up from VA got hit by some jerk in NY, so she now has to have the car fixed. Seems the idiot was too impatient and tried to pass them and a couple of semis while it was raining really hard, she said they were all creeping along when that jerk tried to pass them.. He side swiped them, took out part of her left front wheel well, caromed off one of the semis and rolled himself a few times and landed in the median. I'm just glad they weren't hurt but it took a few hours to be able to continue on their way. We were really worried when she hadn't shown up to the place we were staying in. She was about a couple of hours ahead of DH and I and she expected to be to the hotel before us. Just what my sister needed. The officers and the semi drivers all said the same thing in the police report, that jerk caused the accident. Just hope her insurance company takes care of the repairs and won't give her too much trouble as the accident happened out of state.
Need prayers for DIL 2's father.
Just got a call from Son2, his FIL is in hospital with Stage 2 cirrhosis of the liver with scarring on the liver. HE does NOT drink alcohol of any kind, never has. The doctors have ruled out that and hepatitis out as the cause. They believe this has been caused by the chemo he had years ago,(he's been cancer free for 11-12 yrs now). The prognosis right now is 2-5 years but we are praying that this may change for the better. Because of his cancer years ago, he is way way down on any transplant list. SO any prayers will be appreciated. This is going to be very tough for my DIL as she and her dad are very close. Son 2 was 10 when his grandpa O passed and he wanted to ask us what we told him(said it made him feel better) as this will be the first of some big stuff for the two grands (9 and 6) and he wanted to know how to deal with this and how to help his wife.He talked to DH about this as I was a mess when my dad passed and I still get a little weird at times. Thank you all for your support and prayers
Prayers going up for all involved Kat.
Thanks It means a lot.
Need prayers. DH and I are wandering around here like a pair of zombies, We may lose our two older grand children. Son1 is in Rumania filming and the psycho ex just went to court and somehow got his parental rights suspended. He won't be back until January and the lawyer's hands are tied. We wanted to get the kids the week of Thanksgiving(his holiday) and bring them here to have Thanksgiving with the family but we are not sure we will be able to even talk to the kids as she has gone off the deep end this time. She has pulled crap like this (not as major) EVERY time he has been on out of state shoots. Right now I am sick with worry, she has been consistently denigrating and complaining about the kids going to their father. It's drip, drip, drip in their ears. I know she has made comments about the baby, their sister to my oldest grand daughter, implying the baby has replaced my granddaughter in his affections so why should she see her father type crap. So please, please pray that my granddaughter has the fortitude to stand up to that *itch and tell her to back off. Oh yeah she hasn't gotten the kids passports and Granddaughter is VERY VERY pissed of as Son1was going to have them come on his part of the Christmas break to Paris. DH was going to "escort" them on the plane and they were going to stay until January 5th.
Sorry to hear about all that. I'll be keeping you in my mind. Please let us know how it turns out
Sent from my S41 using Tapatalk
Prayers going up Kat. Keep us posted.
I will and THANK YOU . I think I've figured out why she's pulling this. Can't go into details here but can pm .
Sounds like a Physco.
Got it one BP. We're really having a hard time with this. DIL1 is trying really hard to enjoy her time over there, They are going to see Drac's castle and Grdaughter#3 thinks it's where Vamperina(cartoon character) lives, so she's really excited. Can't wait to see the pictures.Stay safe Halloween, hope you all get bunches of "cuties" in their costumes. We're going to Son2's and walk with the grands. We will be bundled up as they are saying there will be snow tomorrow :(
Thoughts and prayers going out to you Kat. I’ve had a history or this kind of thing with my ex wife, so if you ever want to talk or just vent, I will understand what you are going through. I’ve pm my phone number.
Got it. Thanks again for the advice and the shoulder.
Update on DIL's father: We went to dinner for Grson2's birthday Friday and he is not doing good. He's very thin and frail looking. DIL's mother is concerned as she told me he's forgetting things and has very little energy but he keeps working. He drives a truck, short hauls. He told DH and I, they took the equivalent of 6-7 2 liter pop bottles of fluid off him in the beginning. He is on meds and they seem to be helping but the prognosis isn't good. DIL is not talking right now, she's internalizing it. We've told her that we're here and are supporting her decisions. Thank you all for keeping him in your prayers
Will do Kat. Prayers for them all.
Thanks bp
YW Kat. Hope things are getting better.
Lord, we need prayers, what a start to 2020. My nephew(by adoption) is in the hospital. He has Rhabdomylosis. A muscle condition that cause the tissue to break down and enter the bloodstream causing renal failure. Unfortunately he inherited his birth fathers schizophrenia and had a MAJOR melt down last Tuesday. My BIL and SIL are having a very hard time with this. My Brother adopted all 3 of my SIL's children shortly after they got married and have been taking care of my nephew for the last 20 years. Nephew has been doing well, job, apartment etc. This just came out of nowhere. He may have been having muscle issues for quite awhile as it isn't real prevalent or tested for. It can be caused by injury to the muscles or over extending oneself at work outs.or medicine he was taking.Don't know too much more . Please pray for my BIL and family.
Prayers going up Kat.
Update on my nephew from SIL: Rhabdomylosis is still not under control. Levels are at 2200. They can't get it under control because his brain is not letting him stop talking, moving, or sleep. They keep changing meds and med combos to find what will help him calm down and relax. Because only staying calm, rest and getting IV bags of fluid will get him out of Rhabdomylosis. He has finally been evaluated by his insurance case worker and they agree he needs inpatient psychiatric treatment along with the hospital drs.
We are here and prayin for the best for you and the family.
Thanks all. SIL im'd me tonight, nephews CK levels are down to 620(that's good, not great but good). He's transferred to a behavioral(?)hospital to continue treatment. Told her if and when, could she give him a hug for me. She told me when his care nurse came in to talk to him, he thought it was me and threw his arms out for a hug. Just hope the nurse gave him a hug for me. I'm looking at plane tickets just in case my brother and SIL want me to go out there to help out.Thank you again for all the prayers