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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.
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Prayers are being answered. They will continue.
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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.
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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.
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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
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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
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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! :)
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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
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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.
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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
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That is great news Kat. Prayers continue for everyone involved.
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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.
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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
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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.
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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
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Hold the course kiddo, the end is in site and it is laden with smiles.
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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.
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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.
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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.
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Thanks for the update Kat. Much better having him home. Prayers for his continued improvment.
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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!
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That is a fantastic report Kat. I'm so glad to hear all the good reports. My prayers continue.
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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.
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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 .
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Thank you eagle and everyone here.You are all very much appreciated.
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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.
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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.
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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.
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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.
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An update on my grand nephew from my niece
Her last update was in Feb to the family - my how time flies!!
Quick recap:
• Grand nephew pulled his NG-Tube for the last time - they've just increased his calories/bottle instead of getting another tube.
• They celebrated his 1st birthday with a Facebook Live event. They had strawberries & whipped cream instead of cake, since he wasn't really eating solids just yet.
• He graduated from breast milk/formula to Pediasure.
• March was pretty uneventful (unless you count all the SNOW they got!)
• They celebrated Easter weekend at home (in the snow)
• He got a new car seat because he was almost at the max height/weight for the infant carrier.
• He developed GVHD pretty bad on his hands/arms and feet/legs with a little on his chest/tummy at the end of March & beginning of April. As a result, he started on Prednisolone (oral steroid) and a steroid ointment for the rash.
• The steroids made him SUPER cranky/inconsolable quite often. Grand nephew now has 10 teeth, including 4 molars.No wonder he was cranky LOL
• He saw his speech/feeding therapist on April 19th and she was VERY happy with his progress.
• On April 27th, He had surgery to remove his port. Since then, Niece thinks has he's doing EXCEPTIONALLY well. He's no longer inconsolable, thanks in part to weaning the steroids, his molars are finally finished coming in, and now that they know that hunger can be another side effect of the steroids (they'd been keeping his bottles at 4oz each, not realizing he could take more comfortably).
Twice now, he's been able to take 5oz of solids (stage 3, w/ chunks) in a sitting, with about a 3oz bottle afterward. If he can continue with the 5oz solids, she thinks she's going to cut back on the bottle after, to only 2oz, and see how he does. They've been giving an 8oz bottle before bed, and that has really helped so he's not waking in the middle of the night anymore! If he's too fussy/tired before his nap during the day, They've been giving him an 8oz bottle before his nap too (he typically only has 1 nap/day, around 12-2pm), and that seems to calm/satisfy him. He's been averaging over 20oz/day from bottles for the last week. Her next feeding goal is to transition him fully to solids, with only the occasional bottle.
His GVH rash is looking much better, in her opinion. Tomorrow(Monday) his Prednisolone will be going down to 0.9ml/day and he continues to get the steroid ointment 1-2 times/day.
They will be in Boston again this Wednesday for Ophthalmology with Dr. , for clinic at Jimmy Fund, and OT at Children's.
Next Saturday (May 12th), they will be hosting a birthday party for Big sis and he will officially be off isolation (Finally!!). Niece expects him to be napping upstairs in his crib during the party (we'll see, lol) and will ask everyone to take off shoes & please use hand sanitizer. She will also be putting his toys out of reach from their little guests, just to be cautious. She has included a note with the invitations to let everyone know he would be just coming off isolation and the request for shoes and sanitizer, so she doesn't expect any problems.
She says "I'm looking forward to finally being able to go to the store without having Daddy stay in the car (or at home) with baby and sister, and finally being able to go out to dinner as a family! :) And NOW grandmas can come and visit. I know my sister is chomping at the bit to see her newest grand baby.
Thank you all for the support and prayers. It means a lot.
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AWESOME news all the way around.
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Thank you Yes it is really great news. Here's hoping he continues to do well.
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Got an update, niece reported that gr nephew is having some problems with the sunshine. She says the sun is now bothering him to the point he needs to have baby sunglasses. She contacted the doctors and they want to recheck his eyes and see if the nerves are really healing. They believe that a side affect of the transplant maybe healing the optic nerves and he’ll be able to see more than shadows. Keep the prayers going, they are much appreciated. He is growing like a-weed and so far so good health wise. He is a very happy baby for the most part and his sister has been wonderful helping mommy and daddy take care of him.
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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
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Sure is. They are off to Boston Children's soon, we'll have to see what the Docs say though. I hope to post more (good) news soon
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Well We got some good news the other day. Grand nephew is still tracking objects with his eyes. His PT nurse says while he's still behind in some developmental things he is almost up to age on other things. Niece goes to Children's hospital next month for his check up(one year out from transplant) and has appt. with eye doctor to check on his optic nerves and to see how much he is seeing.Very hopeful there is more improvement. He is sitting up by himself and getting vocal. He is growing like a weed , had his first haircut last month. The meds have him looking like a little werewolf, LOL. A HUGE thank you to all for the prayers and encouragement. Niece says he is now eating more solid foods so that is good news too as there was some concern he wasn't gaining weight like he should. Their cat has been his "bodyguard" when he's on the floor for tummy time. That is to encourage him to roll over, lift his head and try to scoot around.
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OK I'm back up to speed, sounds like the wee one's doing well. Been "detained elsewhere" the last few months. You guys are still on our list of many prayers. At's cool about the road show!
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Great news ; keeping him in our thoughts and prayers.