Prayers needed

[Katrina]

For my grand nephew. He's only 3 months old and is in CHAD hospital in New Hampshire. We don't know what is wrong but one side of his face started drooping yesterday. The family doctor sent them to the children's hospital today for tests. So far he's had a spinal tap, MRI. I hope the doctors can help him and there isn't anything serious. My niece and nephew in law tried for years to have children. His big sister(3) is very upset that her little brother couldn't go home with her and daddy tonight.
Thank you

[Sniper-T]

OH Wow Kat, so sad. I hope that it is resolved quickly and happily.

Thoughts and prayers out to you, my friend.

[Katrina]

Thank you I hope so too. Evidently they found a little blood on the brain. Hospital is going to contact CPS now because they "suspect" abuse. I'm sorry but I really am angry right now My niece and nephew are super parents to the point my niece could be considered a "helicopter" mother with both the kids. Grand nephew was born with teeth buds on the surface of his gums and was premature and the doctors in Vermont have been monitoring him regularly but since the hospital is in New Hampshire, they don't know my niece. I know they may be following procedure but really to jump to abuse when they can't find anything wrong right now?? Lord I hope nothing else gets piled on them.

[bacpacker]

Prayers going up for a great outcome.

[Brownwater Riverrat 13]

I have been in those shoes, and I am right there with them. I'll let LadyHK know, we are with you! Hope everything is well.

[Katrina]

Thanks BRR and BP It seems my niece's visiting nurse talked to the hospital (I think she reamed them a new one LOL) and NO calls to CPS, however the child advocate at the hospital told her that there might be a home visit just to confirm what the visiting nurse told them. He's been moved to a regular Peds room and out of PICU .So far they have ruled out Lyme disease and HSV (Herpes Simplex Virus) They have said the face drooping may be idiopathic and the small amount of blood on his brain may have been a small vessel rupture but he is getting better, niece says his face is not drooping so much and he's nursing really good.Thank you all again for the prayers , keep them coming.

[eagle326]

Hope everything continues to get better Kat. As a father ; grand father and great grandfather it's hard to watch one so young having medical problems. The best we can do is be there if needed as you're doing.
As for C.P.S. We had to deal with them when my 3rd. oldest ;a daughter thought she smarter than us.Her best friend's mom called them on us because she said our rules were too strict. 2 girls come to house with thick black notebooks. Both in their mid 20's. Started asking questions and I asked if they had children and they said no. Asked where they got info on child raising and they said their notebooks.

I proceeded to read them the riot act.
1- Books don't raise kids and if you don't have any ; you know squat diddly.
2- Explained rules of house and as long as they aren't abusive which they weren't you should have come to us in a civil manner instead of I'm the law type attitude.
3- Everything with in the fenced boundary is my kingdom ; I'm the king and my wife is my queen. We are benevolent rulers but will not tolerate disrespect or breaking of rules.
4- She has 2 choices ; follow rules or you 2 can take her and show us how it's done. It's up to her.
5- Lastly we don't bluff so choose carefully.
6- With that we told them to leave our house and if they ever come at us again like Gestapo we will sue them & agency till we own them. And if their boss doesn't like it #4 still applies.

Daughter came home from friend's and became a successful young lady . If I did this today I'd probably go to jail.

We'll keep you in our thoughts that all comes out for the better.

[Brownwater Riverrat 13]

Missed the whole CPS thing there for a minute, but my "little one" was a pre-me, had undeveloped lungs and developed internal bleeding, removed her spleen and she survived and came out six weeks later. Was a long struggle after that and I was a drill instructor at the time. Best thing about it was I was in the Navy, my bills were covered, I paid about $1500 after it was all said and done. CPS did come later after I divorced her mom. She came up for a visit (daughter) and because she didn't call her mom back her family called the local LEOs to my house.............yeah, some things just never change. But hey, my daughter and LadyHK and I are all one big happy family so all is good. Things do eventually work out.......for some. CPS sticks there nose in when they don't need to and don't when they're supposed to.

[Katrina]

Eagle , BRR Thanks how well I know. When Son2 was 18 months old I dislocated my lower leg and DH was taking him to a sitter Son 2 would not keep his shoes/boots on in the car going to the sitters and I got a visit from CPS "abuse thru neglect" is what she told me. Long story short when the woman walked in, yes just walked in, I was on the phone with kids pediatrician when I told him who it was, he had me hand the phone to her and proceeded to ream her a new one about the "neglect" Needless to say she was pretty embarrassed and couldn't get out of the house fast enough AND as DH was an employee at DSS, it embarrassed the hell out of him as well. Turned out it was the sitter who called because as we found out years later, she didn't really want to take care of Son 2 just Son 1 after school.

- - - Updated - - -

Got an update on grandnephew. The test for Lyme hasn't come back yet. They are going to do an ultra sound and his Cranial facial appt is scheduled for Tuesday. Now they are doing a CAP(child advocacy and protection) skeletal x-ray Nurse told niece it's standard procedure. Hopefully this will be over soon and they can go home.
Thank you all for the prayers and support

[Kesephist]

Eagle , BRR Thanks how well I know. When Son2 was 18 months old I dislocated my lower leg and DH was taking him to a sitter Son 2 would not keep his shoes/boots on in the car going to the sitters and I got a visit from CPS "abuse thru neglect" is what she told me. Long story short when the woman walked in, yes just walked in, I was on the phone with kids pediatrician when I told him who it was, he had me hand the phone to her and proceeded to ream her a new one about the "neglect" Needless to say she was pretty embarrassed and couldn't get out of the house fast enough AND as DH was an employee at DSS, it embarrassed the hell out of him as well. Turned out it was the sitter who called because as we found out years later, she didn't really want to take care of Son 2 just Son 1 after school.

- - - Updated - - -

Got an update on grandnephew. The test for Lyme hasn't come back yet. They are going to do an ultra sound and his Cranial facial appt is scheduled for Tuesday. Now they are doing a CAP(child advocacy and protection) skeletal x-ray Nurse told niece it's standard procedure. Hopefully this will be over soon and they can go home.
Thank you all for the prayers and support

I don't suppose the sitter got any charges laid on her for filing false report, eh?

Similar deal happened to one of my tourist customers. He's from Texas, and when the dust settled, the jackalette that pulled all this crap on his family was presented with a copy of Texas' castle doctrine and a written request not to contact him or his family, and was required to sign a receipt for the letter. The presenting party was the guy's lawyer, the county DA, and a Texas state trooper, with a cameraman filming it.

[Twitchy]

Prayers headed your direction Katrina. Sick kids are no fun and scary as hell. Hope it all turns out OK!

[Katrina]

Thanks Kes, No I didn't bother pursuing anything. The State we live in has a policy, ALL calls to CPS are strictly anonymous, we never would have known who reported us had she not written that letter to me after she moved out of state.
Twitchy, Thanks yes it's been scary but...Update Grand nephew is doing much better. All talk of CPS is gone. He's going to see a geneticist as they see his spleen is a bit enlarged as well and it's a good possibility that's genetic. Had long talk with my aunt (mom's sis) last night as I have a good deal of family health history info on dad's side but not a lot on mom's on what might be passed on in the family. History of asthma on mom's side only. NIL is also talking with his older family members to see what there might be on his side. G Nephews face looks much better and niece is doing good as well, she FINALLY got some sleep last night. Thank you all for the prayers and support.
Just goes to show, gotta get one's family health history as far back as one can.

[Katrina]

We have a diagnosis. Osteopetrosis. Basically his bone marrow is turning into bone. They will be going to the hospital in Boston for treatment and hopefully transplants. We are hoping for one of us to be a match. I don't know if I can donate due to my Lupus but I am going to try. Please keep the prayers going we are going to need them

[bacpacker]

Prayers goin up.

[Katrina]

Thanks all for your continued support
I unfortunately cannot donate due to the lupus per my doctor. We are praying for good news when they get to Boston.

[Vodin]

Only the best of thoughts and outcomes for your grand nephew in his time of need Katrina.

[Katrina]

Niece and Grandnephew are in Children's hospital in Boston. NIL and Grandniece are home. Please pray that they will be able to find a donor /donors for the bone marrow.

[Katrina]

Niece just posted the preliminary schedule of treatment. It looks like they will be there for a long time. Nephew will be seeing a geneticist, having chemo in the hospital (8 days) then stem cell infusions, it will be 3-4 weeks before they will get any kind of results. IF all goes well they will be going to be seen in outpatient clinic but she didn't indicate whether or not it will be back home or still in Boston.
Thank you for all your support.

[Brownwater Riverrat 13]

They are where they need to be, they have the best you can get working on him up there. It's all about the kids.

[Katrina]

Thank you Have been in touch with niece, her father flew in Friday but has to leave tonight as he's starting a new job.Don't know if he got tested as nieces phone needs to be downloaded for more room. NIL is sending her USB? sticks to clear out the phone so she can keep posting updates. Grandnephew is doing good, had another CAT scan yesterday, grandpa had him giggling so he didn't mind it at all.

[Katrina]

Great News!!!! They found a donor for GR Nephew. IF I understand what niece indicated as the treatment plan,they have to do about 8 days of chemo first then start the donation of marrow to him. She said about three weeks of donations to GR Nephew She was sending msge to me about 3 AM so she wasn't too clear. Will have more soon
Thank you all for your prayers and support
Please keep praying for them as the critical procedures will be starting soon.
I am going out of state today down South I may not be able to get on-line till 07/13 will try to keep you all posted.
Thank you again from the bottom of my heart.

[Katrina]

Update, GR Nephew and niece are being moved to Spaulding Hospital. I believe it's a rehab hospital to start the treatments. Donor is 100% match but can't get there till July 17th. Thank you all for prayers and support , niece has been overwhelmed not only because of son but the wonderful people that have helped her. Grand niece's day care started a go fund me type account for the medical and living expenses. The whole community they live in has been great as well, donation jars are out all over town. I am so grateful for all your support and prayers as I have felt so bad that we (DH and I) couldn't do more for her.My sister and her ex, niece's father have been doing what they can as well.
Nephew in law doesn't have a real great job so things have always been tough for them but they always have been positive and have worked hard.

[Katrina]

RE:Update, They are staying at Boston's children and GRnephew has two teeth already.So the doc's are really excited that he may not have problems with his teeth

[Brownwater Riverrat 13]

Yeah! Lookin good, so he looks like a rabbit, that's how we all get started! Progress.

[Katrina]

I'm home now .Should be able to get on more often now. Thanks BR he is doing so well. Early pix of him were not too good but with the treatments he now looks like a "healthy" baby and he is more alert and "talking" to everyone.

[bacpacker]

Glad to hear some good news. Thanks for update.

[eagle326]

Yes ; thanks for the update. Looks as though things are staring to fall into place. Our thoughts are with you and family.
Please keep us updated.

[Katrina]

Thank you all. Niece has told me that Doctors are concerned that he may have an issue with his vision. She is concerned that GR Nephew may be partially blind, if it isn't enough he will be starting the chemo and the transfusions on the 17th, now she's worried he won't be able to see. They are staying in Boston Children's for the next month or so. Will keep you all posted on his progress
Thank you all for the prayers

[Sniper-T]

That's sad news about the vision, but great about life. Thanks for the updates, and thoughts and prayers continue in your direction.

[Katrina]

Well Grand nephew started the chemo tonight , niece is waiting to see which one (if any) of the two meds is causing a rash on him. Please keep him in mind he has a long road ahead of him.
Thanks again for the prayers and support.

[bacpacker]

Still got you all in my peayers.

[Vodin]

Thinking of only the best outcome for this situation.

[Brownwater Riverrat 13]

Hey, we're still here for you too!

[Katrina]

Thanks all Niece posted first treatment went well. GR Nephew was bit nauseous but is doing good. As for the rash, they are getting that under control. She said a woman who's child has Osteopetrosis had the same nurse that niece has for her son and her child is doing very good and is very healthy. I believe she is part of a group that has contacted my niece to give her support and offer help while she and nephew are in hospital. Nephew and Grand niece have been trucking up there every other weekend to spend time with them. Does anyone know if Wounded Warriors (or any other group) help the family members of vets? I haven't gotten in touch with them to see if they can help and don't know if NIL has done anything either. Nephew in law is a vet, his National Guard unit was in Afghanistan, he and only 8 others from his group came back (alive) after their tour. I know he has had some help but don't really know what's available for him and the family besides his VA benefits and Medicaid/Medicare? I am looking on line but if anyone has had any experience with the groups would love some advice.

[Katrina]

Update , First transplant done last night . He's staring to experience some mucousis (excess mucus) Niece is getting weepy but the nurses and doctors all assure her nephew is doing fine. They have "chased" her outside to get some air and get out into the sunshine. Learned this morning my aunt (Pop's sister) has passed. AM waiting to hear from cousins when and where funeral will be. She had what she called a cyst on her kidney couple of years ago but didn't have it taken care of. It metastasized to her lungs and rib cage. IT has not been a good couple of months so far .
Thank you all for the continued prayers and support. Will be off probably for a week
Love all, katrina

[Brownwater Riverrat 13]

Thanks all Niece posted first treatment went well. GR Nephew was bit nauseous but is doing good. As for the rash, they are getting that under control. She said a woman who's child has Osteopetrosis had the same nurse that niece has for her son and her child is doing very good and is very healthy. I believe she is part of a group that has contacted my niece to give her support and offer help while she and nephew are in hospital. Nephew and Grand niece have been trucking up there every other weekend to spend time with them. Does anyone know if Wounded Warriors (or any other group) help the family members of vets? I haven't gotten in touch with them to see if they can help and don't know if NIL has done anything either. Nephew in law is a vet, his National Guard unit was in Afghanistan, he and only 8 others from his group came back (alive) after their tour. I know he has had some help but don't really know what's available for him and the family besides his VA benefits and Medicaid/Medicare? I am looking on line but if anyone has had any experience with the groups would love some advice.

It just dawned on me...........FISHER HOUSE, Great organization and I met Zack Fisher and his wife both before they passed away back in 96, super people. They sponsored our ship's commissioning in NYC, USS Kingfisher MHC-56. Tony Bennet was our entertainment the night before, lotsa brass, Blah, blah, blah..............but here is a point of contact if they (family) are still in Boston. Check out the site. Hope this helps.

http://www.fisherhouse.org/programs/houses/house-locations/

Massachusetts: VA Boston Healthcare System

MGR: Beth St. Pierre / (857) 203-4000 / elizabeth.stpierre@va.gov

[Katrina]

BR,
Thanks Cuz;),
Will check this out. Went to FL for Aunt's funeral this last week . Lovely service , her second son is a priest and he did a wonderful homily and Mass. Uncle was so happy me and the 2 sisters were able to make it, just got back SOOO glad I'm in MI as humidity was 90-92% . Update on GR nephew. They still have him sedated and intubated due to the mucousis but sis got word Friday he has a staph infection now and they are pushing fluids.Drs say this is just one of the possible side affects of the transplant but the little guy is a "hellofa" good fighter even at 5 months old. Niece is still hanging in there and I will check out the site and see if I can put them in touch with niece.
Just keep those prayers going
Love you all

[bacpacker]

Prayers are continuing for you folks.

[Katrina]

Update My GR nephew has had the intebation tube removed today YEAH . He is doing better and Niece is able to hold the little guy for the first time in almost 2 months. He still has the feeding tube going but it looks like he is breathing fairly well on his own and trying to "talk" to Mommie. Please keep the prayers going as he still has a long road ahead of him. Thank you all again and again.

[Katrina]

Quick update Gr Nephews Count is up to 800 If he can maintain 500 (or above) for 3 days in a row That says the engrafting is working Niece had a scare the other day, nurse was suctioning off some mucus when baby stopped breathing, He's okay it was a plug of mucus that got stuck. He is still having a bit of trouble breathing properly at night so they have a full face mask breather on him. He looks like a fighter pilot in a jet when he goes to sleep. Thanks for the prayers Here's hoping he and Mommie can go home soon.

[Katrina]

Update This is the 3rd day in a row his count was over 500. YAY HOO! that means he's engrafting (good blood cells are replacing the bad ones) Thank you all for the prayers and support. Now niece has to watch out for germs, (think Bubble Boy) until every thing is stable in GR nephew's system. Please keep him in your prayers.

[bacpacker]

Prayers are being answered. They will continue.

[Katrina]

Thank you , Thank you We're very encouraged about his counts being up. we are just hoping that they will be able to go home soon.

[Katrina]

Just heard from my niece it looks like they will be in hospital till at least the end of September,if he continues to improve.

[Katrina]

Here is what my niece posted on Caring Bridge
He has officially engrafted!! :D ... Friday his ANC was 610, Saturday it was 730, Sunday it was 630!!! ... Monday was 900 - still doing great! No matter where the number goes now, he's officially considered "engrafted" :) Basically, that means the transplanted cells are now producing enough new cells :) With his condition, Osteopetrosis, one of 2 types of cells in his bones were not working - the transplanted cells will produce new cells that DO work, which will stop the progression of any damage caused by those cells' malfunction ... the new cells won't repair any previous damage done, but there shouldnt be any additional damage caused by the Osteopetrosis :)

Sunday morning at about 4-5am, they finished his wean off the Dex - he was at 0.2 when they shut it off (I don't think the pump will let it go slower) ... now we just need to work on his breathing and the only thing keeping him in the ICU is the CPAP mask ... because the ICU nurse-to-patient ratio is usually 1:1, it's been ok for him to be on the full face mask, but on the floor, it's typically 1:2+ and without that constant visual contact (and no "Respiratory Therapy" staff on the floor), it's not as "safe" of a mask to use out of the ICU ... SO ... they gave him another trial on the giraffe mask last night (just his nose) and I'm told he failed miserably ... I've explained the reasons why the triangle nose/mouth mask didn't work before, so tonight, they're trying a different nose mask and so far it seems to be working! (See attached pic) ... I imagine they'll want to see how he does on it for more than one night, so if all goes well, we could be back on the floor by Wed/Thu :)

In other news: the BMT team wants to get the nutrition team involved with him again, to see how his oral skills are since he's been on the NG/NJ continuous feed for so long (over a month), and maybe see how he does with a small bottle ... eventually we'll work on weaning the continuous feed and hopefully get him off the NG/NJ altogether ...

I'm also going to push to get PT/OT to work with him more than twice a week - I'd love to have at least one of them work with him every day (instead of both on the same day) ... hopefully they can work something out that's more scheduled - I think it will be better for him, and for everybody caring for him too <3

This is me: Sorry I couldn't attach the picture but he is filled out and looking like a healthy baby.
Thank you again for all your support

[Brownwater Riverrat 13]

YEAH! I' am sooo happy for you guys! That's a no shitter Kat, being a Dad and having suffered that 6 weeks with my newborn.(26yrs ago seems like yesterday sometimes) It's scary, it still took some yrs for her to level out, but you never would have known what she went through except the scar down the middle of her belly. Keep us posted, sorry it took so long for me to catch up on this. But we're still here for ya. :o

[Katrina]

No Problemo BR
Here's an update from Niece:
We officially moved out of the ICU and back to the Transplant floor at 4pm on Wednesday! We had a temporary room for the night and most of the next day, but our new room was worth the wait - it's probably the biggest room we've had!
PT never did come on Wednesday, but that's ok, because of the move. Our first night back on the floor was pretty rough and neither of us got much sleep. Every time the CA would change his diaper, he would wake up crying, and then she left me to put him back to sleep without even trying to help settle him :( ... the last one was about 4am, and I don't think we got to sleep until 9am-ish ... it was rough ...
Thursday was pretty good - Busy, but good - started with a little sleep deprivation, but I finally got a nap when Noah did, and I requested a sign on the door to keep people from visiting ... then I went to lunch & worked on his scrapbook a little, played with him, went to dinner in the cafeteria, held him for a while, then we finally moved to our "permanent" room around 8/9pm ... I finally got him to sleep around 11pm, then I pumped before going to bed ... that night was much better, and we both got more sleep (different CA, was able to change his diaper without waking him!) ...
From what I understand, there's not much left for Noah's hospital stay, and it sounds like we may only be here for a few more weeks before moving to The Boston House (for a couple weeks before heading HOME) ... he's finishing up a few more days of antibiotics, and under "normal" BMT circumstances, he'd be discharged soon after that, but he has other complications due to the CPAP ...So what's left? ... They're working on getting a sleep study done, to hopefully get him off the CPAP at night (and/or determine if his large adenoids need to be removed), also working with the feeding team to start getting him back to the bottle (or at least off continuous feeds), and working with PT/OT to get his muscle tone back ...
He's on Breast milk now (I have NINE buckets of frozen bottles) - we started his first breast milk as irradiated and fortified, but after reviewing their policies, they discovered that the newer policy states that breast milk doesn't have to be irradiated at Day +42, which was Wednesday for Noah! :D ... Thursday we determined that the switch was too much too fast - he went from Progestimil to Breast milk, from 26kcal to 30kcal, and from 23ml/hr to 26ml/hr, all at the same time - he was getting gas cramps, so we cut it back to just straight breast milk (which they say is 20kcal) at 26ml/hr ... after they spoke w/ the nutrition team Friday morning, they decided to start fortifying it to 24kcal, which we started in the afternoon - so far so good! ...
We had the speech pathologist of the feeding team visit Friday morning, and with a little patience, he actually sucked on the bottle for a few seconds!! THIS is HUGE!! I had just pumped right before they arrived, so we used a little of that, and the amount we gave him looked like mostly fore milk, which is typically sweeter than the hind milk, so not only was it fresh, it was warm & sweet too - so proud of my little man!
He had the needle & dressing for his port changed today (every 7 days while actively being accessed) and did exceptionally well <3 - he had a long 2-3hr nap just before, so that may have helped, but he didn't even flinch when they put the new needle in - in fact he was smiling, lol - he's my "Tough Dude" for sure!
Later in the afternoon, PT came to try working with him, but by then he was getting sleepy & cranky again, so they weren't able to do much with him - plus I'd just changed his diaper and he was still getting over the raw bum (I hope we can get that under control soon <3) ... basically PT just said we can try sitting him up occasionally and work on his neck/trunk strength ...
Any who ... everything is continuing to go forward so far! :)

[Katrina]

Here's another update
After changing the baby's blood pressure med, his rash didn't get any better - it continued to get worse :( After Tuesday's morning rounds and taking a look at his progressing rash, the docs switched gears and decided to treat it as if it is GVHD (without knowing if that's really what is happening, but based on how the rash looked on his back, they were leaning toward it) ... he'd been miserable with itchiness for a few days and only seemed comfortable while sleeping, thanks to the Benadryl ... they are treating the GVH rash with the steroid called methylprednisolone ... he got his first IV dose on Tuesday afternoon ...
Wednesday morning was the first time in a few days that I saw him smile! :) ... he seemed to be feeling MUCH better all day on Wednesday - got his 2nd dose of steroids in the afternoon, and by the end of the day his rash seemed to look a lot better!
In other news, I received a "discharge packet" to review :-O ... it's hard to believe we're finally so close to going home!! Someone will review it with me tomorrow, and they're going to start "teaching" me how to give his meds in the NJ-Tube (I've seen it done a million times at this point, so I have a pretty good idea how to do it) ... it sounds to me like we may be discharged from the hospital in the next week or so!
I'm excited/anxious/scared/nervous ... we've been in the Hospital for so long, I will truly miss all the wonderful nurses - their personalities, and of course their invaluable help with pretty much everything ... I'll also miss having them as "babysitters" so that I can take care of myself with some "me time" ...

I'm mostly anxious/scared because of how vulnerable he will be in the big world outside of the Hospital ... he's not allowed in any public building (restaurants, stores, schools, etc ...), and he can't go to anyone's house or have anyone come visit our house, for 9-12mos after transplant ... Thursday is only day +50, so it's going to be a loooong time keeping him safe ... it's going to be a real challenge while Alyssa is going to school this winter, and it will suck not being able to see family during the holidays for the first time in 12yrs ... we're going to be left out of a lot, but it will be worth it to keep baby safe!! <3

[Katrina]

Looks like they may be going home this week He still has a long way to go. Niece and GR Nephew will be house bound for at least 9 months if not a full year . Nobody in or nobody out and Nephew and GR Niece will have to be EXTREMELY careful when coming in and out. She's in preschool and nephew has to work. Both Grandmothers are bummed they will not be able to have Christmas this year but they understand the precautions the kids have to take. Just hope my niece's boss will let her go back to work from home. Niece runs a website for the boss on Vermont tourism.While she was pregnant, the boss let her work from home 2-3 days a week. Thank you all for the prayers and support. Will have more soon.

[Katrina]

OOPS, they are not actually going home, just transferring to Boston House ( rehab/halfway house?) for a few weeks so niece can get a handle on the medications and feedings for the baby. His lungs are fragile, no reserves is what she posted the other night on FB, plus daddy and big sis have to learn the routines as well for keeping baby safe. She posted a picture of the 3, yes, 3 plastic shopping bags of his meds and a couple of cases of the feeding formula to start. Keep the prayers coming as he is really showing good progress. Thank you all

[bacpacker]

That is great news Kat. Prayers continue for everyone involved.

[Katrina]

Well they are now ensconced in their room at Boston House. so far so good Niece says it will be another 3-4 weeks before they are allowed to go home "home" So far GR Nephew is doing good, he looks so much better now. She's really happy the room has a small kitchen area so they can get some groceries so she can cook food instead of always going out.

[Brownwater Riverrat 13]

Finally got to catch up, things seems to looking good. I am so happy for you guys! This has been a long struggle for you and the family and it's amazing how far "modern" medicine has come. You certainly have the "Big Guy" watching over him. There is obviously a place for this young man in this world. Life is full of challenges and we are constantly tested. But bringing a new life into this world is one of the greatest experiences and challenges of all. Your family is truly blessed. Another prayer goes out to the little guy from me knowing he has a special place in this world. God makes tough little buggers like that for special jobs later on down the road. Tell them to keep him pointed in the right direction as he grows up, he has a special job somewhere, I know it. :o

[Katrina]

Thanks BR We are keeping positive. The little piker pulled his feeding tube out yesterday, so niece had to go back to the clinic get it put back in. The picture she posted was of him with this look on his face like HA HA mom gotcha and laughing. So if he keeps up with the bottle feedings it won't be long before the tube can stay out. She laid out the syringes for his meds , there were 9 of them she has to give him.So far she has been really good doing the meds on her own. Now if he'll only leave the tube alone, she'll be fine.

[Katrina]

Here's another update from my niece
Sorry it's been a while since I've posted an update, a LOT has happened this week!
The steroids that we started worked like a charm to control the baby's rash, and he's currently free of itchiness and much happier. It's unclear if it was drug-related, or if it was caused by GVH, but I think we're leaning toward GVH.
Daddy and Big Sister visited over the weekend - they actually fell asleep & took a nap in the baby's room while he had a bath. We didn't do much - went to the Galleria for lunch, went to Bertucci's for dinner, watched movies in our room at The Boston House, played in the 6th Floor Playroom, went shopping at a baby store called "Magic Bean" or something like that and popped-in to a couple kids clothes stores nearby. Of course Daddy had to stop at a comic store we found too ... then we went to Target to get baby supplies for the hotel room/apartment (diapers, wipes, etc) ... and stopped to get ice cream afterwards <3 :)
I got the discharge info packet last Wednesday, got a bunch of teaching on Thursday and Friday, and the baby was almost released on Monday but not all of the meds were ready, and supplies for his feeding tube hadn't arrived yet, so we planned for Tuesday ...
Monday night was the first time I stayed at The Boston House by myself and I was pretty emotional, missing Hubby & Big sister, but I made it thru the night ... Tuesday arrived and I went to get the last of the baby's stuff from the hospital and brought it to the hotel ... went to Target again, to get a few groceries this time ... feeding supplies arrived at the hospital sometime after noon and after I got his prescriptions from the pharmacy ... the nurses reviewed all meds to make sure everything was there - had to wait for 2 that were missing, but they went over everything with me and taught me how to draw the meds into the different size syringes ... then finally I went to pickup those last 2 meds while the nurses got him dressed and ready to go ...
Then we had a "Bubble Parade" on the way out of 6 West ... it felt so weird taking him off the floor in his car seat, and I was so nervous about transporting him - he had a mask on at first but was really irritated by it, so I ended up taking the mask off and just put a blanket over the carrier ... a nurse helped me bring the last of his stuff downstairs where we got an Uber ride to The Boston House ...
Wednesday was our first day out if the hospital, but we had to get to the Jimmy Fund Clinic for his first outpatient checkup ... the clinic visits are basically like Morning Rounds while he was still inpatient - draw blood, take vitals, go over lab results, discuss how he's doing overall, and make a plan for moving forward ... they decided to wean his Ativan and Prednisolone a little, but everything else stayed the same ... they also dropped his platelet goal from 50k to 20k, which meant he didn't need a transfusion at that visit ... the whole day was a learning experience for me - how to take him to Clinic, getting a Taxi to & from clinic, deciding what to bring & what to leave behind (especially since I don't have a stroller - but I just ordered one of those Universal ones that are supposed to work with all infant car seats, so hopefully this will become much easier) ...
Thursday I planned to stay in the apartment and not go anywhere ... but then he pulled his NG-Tube *sigh* ... so we had to go to the clinic again to get a new one ...
Friday (today) he had another Clinic appt ... everything looks good, and they didn't wean anything, but because his platelets dropped since his last clinic, they decided to give him some, to be safe for the weekend ... other than that, not much has changed, and his next clinic appt is on Wednesday morning ... hopefully he won't pull the tube again, so we can stay "home" for a few days and I can work on building my milk supply ... this whole week I've barely been able to pump at all, so my supply is very low, but I've brought it up before and am confident that I can do it again!
Life is SUPER busy now that I don't have the nurses to help or to watch him while I go out to do stuff ... but we're ok so far! ... probably another 2-3wks here in Boston before we can go home to Vermont, and I still need to coordinate his care up there ... there's a LOT to do ..
From katrina, Thank you all again for your prayers , we are very happy he is doing so well so far

[Sniper-T]

Hold the course kiddo, the end is in site and it is laden with smiles.

[Katrina]

I certainly hope so Sniper. She posted a video, he has sleeves to keep him from pulling the feeding tube but that little goof has learned to pull the sleeves off even in his sleep. He is getting better every day We are so happy things are progressing as well as they have.

[Katrina]

Well So far so good he's doing really good . My niece is getting anxious to get home,she's been a real trooper dealing with the meds and feeding time. GR Nephew is slowly relearning how to use the bottle. She posted he got 100mls down with the bottle today,YEAH!! She's hoping this next week he'll rely more on the bottle and they can get rid of the feeding tube. We've noticed his eyebrows are coming back in and they are dark and bushy, now it's just a matter of time til his hair grows back. He is such a cutie.

[Katrina]

Sorry I haven't been on much.
Update: They ARE home!!!!!Niece had the specialists appt for sons eyes before they were released. I'm sorry to report that he will not be able to see much more than shadows per the specialist. A healthy optic nerve is pink, Gr nephews is white, there may be a slim chance that as he grows older that may improve. I only hope medical technologies will be there to help him. I'm just praying that given the current climate regarding "Special Needs" people, he will be helped with out bankrupting his parents. Niece is exhausted but very glad to be home. Please keep them in your prayers, it's going to be a long haul for them. He will have to be monitored daily so the visiting nurse will be seeing him regularly when they don't have to go to Dartmouth for check ups.His white blood cells are doing good and the red ones are also coming along well enough so they could go home. We are very happy but reserved. Just hoping for the best.
Thank you all again.

[bacpacker]

Thanks for the update Kat. Much better having him home. Prayers for his continued improvment.

[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.

[Katrina]

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.

[bacpacker]

AWESOME news all the way around.

[Katrina]

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

[Katrina]

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.

[Katrina]

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

[bacpacker]

More great news

[Katrina]

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

[Katrina]

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.

[Brownwater Riverrat 13]

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!

[eagle326]

Great news ; keeping him in our thoughts and prayers.

[bacpacker]

Still in our prayers Kat. I am thrilled to hear about his progress.

[Katrina]

So are we Thank you.

[Katrina]

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.

[Katrina]

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.

[bacpacker]

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.

[Katrina]

Thank you BP much appreciated.

[Sniper-T]

Wow, great progress.

Tx for the update.

[eagle326]

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.

[Katrina]

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.

[Katrina]

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!

[bacpacker]

You are all still in my prayers. Glad he is making progress. More to come along the way.

[Katrina]

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!

[Katrina]

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

[Katrina]

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.

[Katrina]

I am sorry to report my grand nephew has passed. Thank yo all for your prayers

[eagle326]

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

[Katrina]

Thank you eagle it is very much appreciated.

[bacpacker]

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.

[Katrina]

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.

[Katrina]

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.

[Katrina]

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

[bacpacker]

Prayers going up for all involved Kat.

[Katrina]

Thanks It means a lot.

[Katrina]

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.

[gm2]

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

[bacpacker]

Prayers going up Kat. Keep us posted.

[Katrina]

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 .

[bacpacker]

Sounds like a Physco.

[Katrina]

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 :(

[Domeguy]

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.

[Katrina]

Got it. Thanks again for the advice and the shoulder.

[Katrina]

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

[bacpacker]

Will do Kat. Prayers for them all.

[Katrina]

Thanks bp

[bacpacker]

YW Kat. Hope things are getting better.

[Katrina]

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.

[bacpacker]

Prayers going up Kat.

[Katrina]

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.

[Brownwater Riverrat 13]

We are here and prayin for the best for you and the family.

[Katrina]

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

[bacpacker]

Prayers continue Kat

[Domeguy]

Our thoughts and prayers are with you Katrina.

[Katrina]

Small update: "Talked" with SIL tonight (via FB), nephew is still in hospital but is becoming more and more coherent. He actually called my SIL from his room to ask some questions. We're hoping this is a sign of good things to come. Many thanks for all your support and prayers.

[Katrina]

Sorry I haven't been on for so long. Have to report my DIL2's father passed yesterday. He had been doing better but his heart was not strong enough and just gave out. Thank you for all your prayers and support. It's going to be really hard for my DIL2 as she was the closest to her dad. Unfortunately her sisters will not be much help.

[bacpacker]

Sorry to hear about this Kat. My prayers will be with them.

[Katrina]

Thank you bp. On the other front, my nephew is no longer a "threat " to himself or others and has been moved to an assisted living facility with full medical services as his insurance won't pay for anything any more. He'll be there 90 days(to start), SO BIL and SIL are paying for it. He's still in full psychosis and is being medicated. Not sure if the Rhabdomylosis is under control yet as nephew is an adult and the docs are bound by the HIPPA law. Hopefully my niece has been able to become his guardian and can get more information soon. As for DH and I, we're just chugging along. Have to take Miss Chloe in, her chin "acne" is gotten way worse, Doc's gonna take a biopsy. Plus She's been yanking her hair out along the one side of her. Vet thinks it may be part food or environment allergies and maybe part behavioral. Have had her on special diet now for 2 months now and she's not stopped pulling her hair out. Oh well, we'll find out more after we take her in tomorrow am.My worry is it's cancer and it may be the kind Zephyr had, incurable.

[Katrina]

Thank you for the continued prayers. DIL2 is still having problems with her older sister and having a heck of a time trying to find an assisted /low income place for her mother and younger sister. Her mom is not going to be able to stay in the mobile home as the SS is not a whole lot, DIL said its only about $1000.00 a mth. Keep the prayers up that she is able to rectify the situation. My nephew is getting better, I believe they may have the Rhabdomyolosis/ schizophrenia under control now. I hope he will be his old self soon. Thank you all for your prayers and support.

[Katrina]

Hello all!! hope you are all doing well. Update on nephew, he's doing better, thank you for the prayers. Son2 and fam were here Friday for dinner. DIL2 says that mom will have a spot in the senior living appts near us and as soon as the younger sister completes her training as a home care she and mom will be able to move in 3/1. Just an update on Son1 and the older grands. He went to court about a week ago and got ALL his time back with the kids. He has a new lawyer that is really good thank you again for the prayers. However the psycho wants to change the agreement AGAIN, so we're off to court in April. It will be "interesting" to say the least. The kids will be testifying and there's a good chance I'll be called to testify. I had to send his lawyer a letter detailing things I've observed.No I don't hate her, she is mentally unstable and all I want is for her to get treatment before she does something stupid to the kids or Son1. I am hoping that this go round in court will be for the good of the children not her throwing her weight around. SO keep praying for him. Thank again everyone for the prayers and support.

[bacpacker]

Well good news all around for now Kat. Glad to hear it. Hopefully the April session will go in your sons favor.

[Katrina]

Thanks bp, Appreciate the support.

[Katrina]

Hi all been keeping busy. Thank you for the prayers and support. DIL2's mom and sister are in the senior living apts now but DIL2 has been getting the apt set up and moving the few things mom and sis need from the old trailer.We've been watching the kids for her. Just learned that there are 19 cases(CV19) down by Son1 in GA. DH and I are going down the end of the month for the baby's birthday so I am praying that we stay REAL healthy. No, that stubborn man is determined to go so I will be packing wipes and maybe adding oil of oregano to my regime, taking minerals and elderberry already. I'm praying that we ALL stay healthy and safe

[Sniper-T]

Kat,
Amen!

[Katrina]

Thanks Sniper. DIL2 is happy they got mom settled. She just has to get the rest of the paperwork sorted out. Been hard now that things have shut down. But as she said "I'm off work till the schools open so I can do a lot from home on the computer".
Posted elsewhere but we're not going south end of the month.Staying home and hoping this will get better sooner than later.

[Katrina]

Hi guys, pray for me. DH has to have a full knee replacement soon. He went to new doctor (his is leaving her practice).
The X-Rays show there's no cartilage in his left knee and his right is showing spaces where it's gone too. For now they are going to try a series of new shots to hopefully fill in the lost cartilage but he will probably need to go in after first of the year. Told DH to get the crutches out NOW and practice otherwise he'll be falling all over the place LOL. It's going to be hard as he is pretty active (for an old coot) and he's not one to just sit around. Going to have to find a good diet for him so he doesn't gain too much weight while he's flat on his back. I put on about 35-40 lbs during my back to back surgeries a couple of years ago. Got the first 10 off still trying to get the rest off. Other than that we are still pretty healthy and I have been busy knitting and crocheting things for the kids for Christmas.
Update on my nephew, thanks for all the prayers. He is doing much better now. BIL and SIL had to move him from the first home, it was terrible. They didn't take care of him and he was getting worse. So they moved him into another group home and he is doing much better. The home is half the rent and there are only about 5-6 other people there. He gets 2 hot meals a day and is looking so much better. He is fully on disability and can now pay his rent himself. SIL and his sister are now co-guardians for him. The house mother was talking about getting a dog for the home the other month and nephew said he had a dog. So he's allowed to have Rollo and believe me he is one spoiled puppy dog now .Everybody loves the dog. We are so glad he's doing better. Thank you again for all the prayers.

[Domeguy]

Wishing him all the best. I know what it’s like. After my broken femur, then the knee replacement, then the hip replacement, then the fall from the porch stairs, I had a lot of down time last year and gained a considerable amount of weight. From one old coot to another, stay as active as possible...just not too active.

[bacpacker]

Prayers going up Kat.

[Katrina]

Thanks guys, appreciate it. Not looking forward to DH being down. Dome, glad you're back up and about. Hope you are doing better.

[Katrina]

Just to let you know. I am going in for surgery this coming Thursday (1/13). I was diagnosed with Stage 1 cancer and will be having a portion of my right lung removed. It is a cheerio sized spot, 1mm that showed up on the xrays in October when they(doctors) thought I was having a heart attack. Turned out to be extremely severe acid indigestion but that's when they found the cancer. I had spent time at Son1's taking care of DIL and the granddaughters (yes oldest is now living with her father TG) after DIL's surgery. Son1 was on movie at the time, after being off for all of 2020 and most of 2021. SO DH and I went down to help out. I took a very bad fall just before we were due to come home and the docs now think I bruised my heart when I almost did a Mary Poppins off Son1's deck. I was trying to put down and secure the patio umbrella before it blew off the porch before one of the many storms they had. Just as I was cranking it down the wind gusted, my arm got caught and the umbrella almost took me off the 2nd story deck, (son's house is built into a hill) and I landed on my keister quite hard. Bruising didn't go away for couple of months. Made it tough to sit comfortably LOL. And things went downhill after that, when the hospital did an enzyme test that's when they thought I was having an attack because the levels were rising.After all the testing they said I have a strong heart , like bull HA HA but there was this spot on my lung. SO that's what Ive been up to this past year. I just hope and pray that 2022 will be a heck of lot better.

[bacpacker]

My prayers are with you and the hubs Kat. The good Lord has this.

[Katrina]

Thanks BP. Will let you all know how things turn out or I will have DH contact ladyhk and brr via phone. If ladyhk, you haven't changed your #.

[MIII]

Always at the ready to send Prayers!

[Katrina]

Thank you all for your support over the years. It is with extreme sorrow to have to report we have lost our firstborn. AKA Son1.
He leaves behind 3 children and wife.
We will be holding the Memorial Service on Saturday, February 12, 2022, at Palmer Bush & Jensen Family Funeral Home located at 5035 W. Holt Road, Holt, MI 48842. All are welcome to arrive at 1:30pm with the service beginning at 2:00pm. Masks will be required by the funeral home in order to attend. There will be a small luncheon/gathering to follow service at Buddies Bar & Grill.
For anyone that is not able to attend the Memorial Service in person is welcome to view it online by visiting the Facebook page for Palmer Bush & Jensen Family Funeral Home and scrolling down to the live post. Here is a link to their Facebook page. https://www.facebook.com/PalmerbushJensenFamilyFuneralHomeOfficial
The service will go online at approximately 1:55pm.
The family is requesting that in lieu of flowers for the service a donation be made in Chris’s honor to charity: water. During Chris’s time in Namibia he saw firsthand the devastation that not having clean water can cause communities. This charity was close to his heart as they travel the world providing clean water to children in third world countries.

[RedJohn]

Sorry to hear about your loss. I’ll say a prayer for him, his family and yours.

[Katrina]

Thank you RJ , it is very much appreciated.

[bacpacker]

My prayers are with you all during this time. So sorry to hear this news Kat.

[Katrina]

Thank you bp. Much appreciated.

[Brownwater Riverrat 13]

LadyHK an I send our thoughts an prayers. Very sorry for your loss Kat.

[Sniper-T]

wow, extended hugs Kat; to you and all of yours!

[Katrina]

Thanks Sniper. We are reeling and trying to deal with this.It's been hard.
Thank you everyone. Your support has been much appreciated .

[bacpacker]

You all are still in our prayers Kat

[Sniper-T]

I am hoping that you are dealing well with this loss. Please feel free to ask for assistance if you need. We're all here to help as we can.

Hugs Kat!

[Gunfixr]

Sorry to hear of your loss, Kat. I've always thought that the loss of a child is the worst to bear. But, you are stronger than you know, you will get through it.

[Katrina]

Thank you Gunfixr. We're doing as best as we can. Right now it's doubly hard as I had some major surgery end of January and am not up to par yet.

[bacpacker]

Prayers for you to heal fully Kat. As well as for everyone in general

[Katrina]

Thanks bp much appreciated

[Katrina]

Well I'm still alive(LOL) Went to pulmonologist and actually surprised him. I am at 94% capacity in my lungs, he only expected me to be at 75% after losing third of my right lung lobe and my SAT rate (oxygen in the blood) is still up about 98-97% just as it was before the operation.For those who may not know I WAS a 50+ yr smoker. I STILL have NOT picked up a ciggie, even with losing Son1 and this operation.The Good Lord must really think I am some kind of bad A$$. Thank you all for keeping me and the family in your prayers,I continue to keep all of you in mine. Oh and thank you for the birthday greetings.Guess I'm not doing too bad for "an old lady".

[Gunfixr]

Congrats on staying off them, and keep up the good work.
The lungs will heal, unlike some things.

[Katrina]

Well Doc gave me to go ahead so I went to my 50th Class reunion Saturday. Man I'm old LOL. Anyways We are going to be traveling next month. Am headed down to Tennessee to see Grand daughter1 and grandson1 then over to Georgia to see granddaughter#3and the DIL for a few days.In Aug heading to family reunion in Vegas for a long week end (sorry I can only take one of my brothers for a few days before I want to smack him upside his head,love him dearly but he is a jerk), then DH is talking going to AZ in October for our 48th anniversary. We have beans, peas and tomatoes coming along well. The squash is doing good too. Just hope I'll be able to get them put up before we start traveling. Our onions and carrots are not doing so good, DH tried the tapes with seeds on them I'm not sure but I think he may have planted them too deep in the boxes as there are only a few sprigs showing right now.Hope every one is doing good and staying safe.