Hellobee Boards

@Ms.Badger: oh no!! I'm so sorry to hear that. Please let me/us know if there's anything we can do that would be helpful or comforting. Big hugs. I hope everyone in the PICU is over the top nice to you all.

@lizzywiz: haven't had enough safe/normal time to feel this way yet, but that's exactly how I felt before this most recent hospitalization started. I try to tell myself that dealing with the event/emergency is stresssful and worrisome enough, why spend additional energy worrying about something that hasn't even happened yet? I think the anticipation can be super hard to deal with, since you can't do anything to help whereas in an actual event there are tasks that need to get done (go to the hospital, etc).

@lizzywiz: Hey-- whatever works for you. I much prefer talking on the phone. I'm a texting dinosaur and can't type as fast as my mind races. But don't feel bad if it's not your thing.

I've found that when things are slower I often have "delayed anxiety" where it'll get really bad after the fact, probably because I have the luxury of more time and wherewithal to wallow in it.

We are doing okay right now. Some good, some bad. Mostly good.

@lizzywiz: I understand you not replying, when things got bad again I didn't want to post either. Please reconsider talking and texting with us - I've been in touch with @Mrs. Twine: and @beaker: and it nice to have that more immediate response than through the board.

LB's most recent treatment finished two days ago and, so far, has been very effective. Besides the pre-med steroids making him a little crazy, he's doing pretty great! He was released for home last night! We're not completely out of the woods as his liver numbers are still fairly elevated, but they were decreasing everyday. He's also very immunocomprimised and any illness will send us right back to the hospital, but we are home.

Anyone have any advise about getting babies back on schedule? LB is so off and for the first time since we transitioned, he will not sleep in the crib. I'm hoping this is still an effect of the steroids, but more likely he's just completely off.

@lizzywiz: I think PTSD-like issues are really common after any of the things we've been through and often they don't totally show until after when things calm down a bit because you're in survival mode during. It's taken a very long time for things to start feeling a little bit more normal.

@beaker: Yeah, thanks for checking in with everyone-- I'd love to hear how everyone else is doing, too! Sorry you and your oldest got sick-- but yay for being pump weaned and being able to take medicine that might help you feel less yucky!

We are actually considering homeschooling for next year. The whole paraprofessional thing is a bit of a cluster. Ellie doesn't get along very well with the new one, the one who was temporary apparently went back to being pretty grumpy with her and it carried over to this new para because that was her "training" (ugh!), Mr. T is all in a lather over how little time they actually get to sit down and eat, and now she is being bullied by a couple of older kids as well as a few in her grade. Definitely wouldn't pull her just due to any one of those things in isolation; it's mostly the para thing that has us considering homeschooling-- she really needs that stability and it seems like there is no way to ensure that there aren't tons of personnel changes. But maybe we are jumping the gun and over-reacting. I kind of hope so.

@Mrs. Twine: what a tough choice! The socialization and modeling is really important...but if she's upset all the time it's not worth it :(. Are there other schools you could go to?

D is doing well. We switched to whole milk fortified with whole milk powder (so off of pediasure) and the puking has stopped. Super thankful!

@beaker: @Mrs Green Grass: I think our worry right now is that her socialization isn't really very great for the most part anyway. She tends to not be included by many kids, and then when she is she is often teased in ways that she doesn't pick up on. And I'm probably being crazy over-protective parent on this one. I don't want her in a bubble. I DO think it's perfectly okay for her to struggle sometimes and have challenges with other kids that she can handle on her own. We just feel that this is a little more extreme than that at this moment in time. But it wasn't that way to start with, so it could change. For sure we wouldn't do anything until next school year. We are most drawn to the idea of doing her academics at home, but then having her at the school she is at now to do extras like music and physical education and her special ed. services so she still gets to be with those kids regularly. Though that might be even more of a disaster since she wouldn't have her para at all in that case. We'll see. There aren't any other local schools to try, really. There are some that are further away that might be last resorts, but oh! The long bus rides!

@Mrs. Twine: I would think you could put her in some clubs/sports/rec classes to help make up the socialization aspect too. You'd be able to do the academics at home but keep her enrolled for the other stuff? I didn't realize that was possible! My only worry would be that she would get teased/bullied if she was the only one on that schedule, versus an afterschool activity where kids could be from different schools, etc.

I found this thread and thought maybe I could bump it. We got LO's hernia surgery scheduled for 2 weeks from now and I know hernia surgery is not the biggest deal but it's just one more thing piled on top of all the procedures and appointments. And if one more person says it's common, I'd like to ask them how they'd like to get the news twice in one week that their newborn needs surgery, and on top of that that he can't hear.

I'm feeling more and more exhausted that every morning now I'm dragging him out to the doctor. It makes me a little bitter to hear about how babies his age should be sleeping or what I should be doing with him because honestly it screws up our whole day's worth of sleep (and nights) that he's always awake and at the doctor. I just wish someone would take him away for a day so I could not have to think about caring for him on top of this.

@beaker: DH's family lives in the area and we did try asking MIL to babysit (even with me staying home, just so I can get things done around the house and not have to be "on") and it didn't go well. This is the week we really ramp up with EI and we have an MRI at the end of the week, and LO gets his hearing aids in 2 weeks, so I feel like I can see the window to take care of my PPD closing.

@spaniellove: Ugh. Agree with trying to find any options in your area, have you tried care.com? As DS2's doctors always told me, the only way you can keep taking care of him is if you take care of yourself too. What region are you in? Maybe we could hunt down a HBer to help?

Is he doing the MRI outpatient, sedated? How often are you getting EI services?

@spaniellove: You can post an ad saying you're looking for someone on an irregular schedule and/or for someone for occasional babysitting gigs instead of a regular nanny.. when I was looking I found people who had a morning gig and were looking for afternoons, etc.

Many of the appointments fall into a regular pattern (like, our GI clinic is only on Wednesdays) or you can try to do it yourself - although stuff like MRIs is normally just you're given a time to show, not asked when (right?). Are you looking for a sitter to help take him to appts and stuff?

I started saving everyone who called me into my phone, even with vague info, I'd put whatever I knew, and ask people's names right before you hung up the phone (and at our GI clinic some of the people share phones but normally they'd be in similar roles, so it was ok to get the wrong person). My DH and I also share a google calendar and I just made myself put every new appt in. I also created a google drive spreadsheet to track his meds since everyone asked for that, and for a while it changed every week.

Honestly, navigating this stuff is like learning a new language or being dropped into a new place. At some point it'll be second nature but you just have to keep putting one foot in front of the other!

I hope his MRI goes well. I think I already told you DS2 never cooperated unsedated

@spaniellove: well, when they tried to do it, he was about 7 weeks old (still not term). That said, they put him in this board thing (in the pic, they velcroed the blue plastic sides up to him, like a papoose or something), tried giving him a paci and the MRI guy was singing to him and rocking him. DS2 hated it, didn't sleep, and they gave up.

I've seen many folks with assistants going to appointments at the hospital. It's not a bad idea, especially for the early get-to-know-you appts when there's a lot of info exchanged.

@BlueberryPie: I left a message on your wall!

@BlueberryPie: hugs I hope you can find some support here!

@spaniellove: I agree with setting a sitter and not worrying about appts...bring sitter or not. I've had our nanny or my mom come from time to time and it really helps! Sitting in a room for an unpredictable amount of time can be pure torture! I also use a lot of HS kids (because they are my former students), but they are so flexible which is great. I hope it gets easier as tr services start to get more regular.

@beaker: Thank you! He has actually already been evaluated by a DT and PT through our state program, but they didn't find any delays since he was less than a month old at the time. Every doctor we had seen emphasized starting EI as soon as we could, but the therapists seemed surprised (in a positive way) that we had reached out at such a young age. Anyway, they're coming back out in a couple months, or sooner if we think it necessary, to reevaluate. I have a book on gross motor skills for children with Down Syndrome, which has some great exercises, but it has totally taken the fun out of playing and interacting with my baby. I find myself critiquing his every movement, even though he seems to be fine by the therapists' standards. I need to stop worrying about problems that don't exist!!

@Mrs Green Grass: Thanks

@lizzywiz: So sorry I missed your last post! It breaks my heart to hear about your sweet girl not feeling well. I don't even know her, but I can imagine it is so hard on your whole family. I'm glad she's feeling better today though.

Concerning your doctors, I don't have too much advice. We consider ourselves very lucky that the pediatrician we chose has been amazing at managing our little guy's care. All the specialists we have seen have sung her praises, both professionally and personally. I'm not sure if you see a specialist, but maybe they could recommend a pediatrician or practice. We have had to see a couple other docs in our ped practice, and that has been beneficial. They all had additional advice to offer us. So even though we love our main ped, going to a group practice has been wonderful -- just something to consider.

I hope your LO continues to feel better! And I hope venting made you feel better -- it always works for me! Let me know if you need anything. I'm just a stranger, but I'd be happy to help.