Updates on Laurel: November 2001

[Posted by Bob] 

Laurel isn't feeling well, not exactly sure why. We need some "feel better" vibes.

But that must not have been all of the problem because a little while after she woke up she started getting fussy and crying again. So, we put some more Tylenol in with her next feeding and she seemed to get calm again. Her gums have changed a lot in the last couple of days so now we're thinking that maybe this is teething, finally. She doesn't have a fever although she feels warm to me. She slept for most of the night but was agitated again this morning.

She threw up after the 7 PM feeding last night and again about an hour after the morning feeding this morning. She was also fairly agitated even after getting more Tylenol this morning.

I'm a bit concerned that it might be an ear infection because she's just (within the last couple of days) gotten over a cold and that was about the time she got her last ear infection. Since she doesn't use her arms much, she wouldn't be grabbing her ear or doing other signs to indicate that they were hurting.

So, to make a long story short, she's not feeling well and I have a call in to the pediatrician to talk it over. She could use some "feel better" vibes. She also has a visit scheduled to her neurologist this afternoon and I'm hoping she isn't too worked up at that point.

[Posted by Bob] 

UPDATE after neurologist visit:

Her blood work was okay - platelets still a bit low, but okay.

We did mention that we've started seeing an occasional few seizures, we think but they seem to have died down again in the last week from what they seemed to be a few weeks ago. So, we decided to leave everything as it is now and just watch, as we always do. If the seizures do show up again, the next plan is to up her drug levels a little bit before trying out any other drugs.

So, kinda depressing, but only because it would have been nice to have some independent verification that she's doing better. But I really have to remind myself that we don't need that, because we know she's doing better and other people that see her think she's doing better so, dammit, she's doing better!

We'll see the neurologist in 3 months.

On the original point of this thread - Laurel still seems like she's feeling better so thanks, again, for the positive vibes. I'm going to NOT give any Tylenol at the next feeding and see how things go.

Thanks for thinking of us.

[Posted by Bob] Laurel did much better last night. And she had a really good eye doctors visit today. She was mostly calm and very alert and looking around. She only got upset when he put those nasty dilating eye drops in (and who doesn't get upset by that) and she got fed up about 2/3 of the way through the peering deep into the eyes that follows those drops by 15 minutes. I was so proud of her.

She still isn't really tracking anything but she is looking around nicely and she doesn't show very much nystagmus or any strabismus. Kids with profound vision loss generally have bad cases of both. So, it's pretty clear that this doctor's take on things is that she sees pretty well but that its her developmental delay that is getting in the way - i.e. she isn't making much sense of what she sees, but she can see just fine. It's difficult to be sure, though, until someone can actually give some other indications besides just motor responses. So, I think it was a pretty positive visit and I was so proud of her for being so well behaved for most of the visit.

Thanks everyone for thinking about us and for the positive vibes yesterday.

[Another country heard from, at about the same time. :-)] 

Update on Laurel...

And this morning, she went to see the eye doctor. He said that it was inappropriate to diagnose her with cortical vision impairment yet (as the person from the Dept. for the Blind and Visually Impaired did) because it's not possible to say whether the problem is that her brain isn't processing the images properly (which is CVI) or whether it can't make sense of them after they've been processed. Whatever it is, it still seems to me that the thing to do with her right now is to work with her on looking at simple, high-contrast things because that seems to be what she responds to, when she responds to something. The good news that we got is that he told us that if her vision were severely impaired her eyes would either waver (nystagmus) or not focus together (strabismus) and he didn't see either. And her eye structures still look fine. On the other hand, I guess that backs up the idea that she doesn't "see" because her brain is too disorganized, which is depressing. But then, if that ever got better, her vision would too. I think Bob was happy, but I guess I have mixed feelings about this.

Thanks everybody for posting to Bob yesterday! I was tied up all day yesterday because we were interviewing for a new executive director where I work (the staff was one of the interview teams). Although I did leave long enough to go to Laurel's neurologist appt. It was a loooonnnngggg day...

Another day of screaming baby...

Thanks for listening...you guys must get awfully tired of hearing me complain...

So, it turns out that Laurel has another ear infection...

Thanks everyone for the hugs and support last night! I guess, given the ear infection and that it was a little chilly out, it's probably just as well we didn't take her anywhere. My ILs are coming on Wednesday for a week and a half, so hopefully we'll get to go out soon! (I may be the only person on this board who actually looks FORWARD to their ILs visiting.) Thanks again!

[Posted in response to a question about our getting out]

My ILs are coming this week, so hopefully we'll get out soon! Although I wish we could get out during the day and go for a hike or something, I'm *so* tired of being cooped up inside and pretty soon it'll be too cold to go out.

We do take Laurel out sometimes during her feedings - the equipment lugging isn't that bad, we use a big 60-mL syringe instead of the pump. We can fit everything we need into her diaper bag. I think one of our biggest problems is that she seems more likely to throw up when we feed her away from home. And there is nothing like having your baby projectile-vomit 6 feet across the mall floor to make you want to crawl into a hole. Also, she only puts up with being in her stroller while it's moving, so we have to hold her (she's also more likely to throw up if we try to feed her in the stroller), and it's pretty much impossible to carry her and feed her, so we have to allow for at least an hour sitting somewhere and not doing anything else. It's doable and we do sometimes do it, but it's a pain. And the funny looks get tiresome too. We've both been depressed lately about her lack of progress with oral feeding, because we would be SOOOOOO happy to stop the tube feedings!

Anyway, with her starting antibiotics and the arrival of my MIL (who is a nurse and a huge help), hopefully we'll get a bit of a break...

Laurel seems to be feeling better already! She slept most of the night (woke up a little before 6 AM) and she's even letting us put her down some. Although she was crying this morning during her feeding (she cries a lot of mornings, though, sigh...). But she's already MUCH calmer. Such a relief...

What a long day. Today I got my allergy shots and replaced another 5 things of the 60 or so that were stolen and refinanced the house and finished getting ready for my IL's arrival (they're here now) and ran a couple of other errands. Oh yeah, I think I mighta worked a little in there somewhere. Goodnight all!

I need your advice! What should this cake say?

Dear little Laurel Garwood will be celebrating her first birthday November 11! Mom and dad, Bob and Rochelle, would like to thank the congregation for all their help and support over this most difficult year. There will be cake and good cheer after both services that day. Please help us celebrate!

OK, now we are having a little debate over what the cake should say! (Actually two cakes, one for each coffee hour.) I'm going to try to present this as even-handedly as I can:

1) The cake should say "Happy first birthday, Laurel." Argument for: After all, that's why we're celebrating, it IS her birthday - a day that, for a while last year, we weren't too sure we'd see. Argument against: This looks like we're making the church come to Laurel's birthday party.

2) The cake should say "Thank you, TJMC." (TJMC is the acronym for the church.) Argument for: We're having this at the church to thank people, so the cake should say that. Argument against: Doesn't acknowledge the main event of the day, Laurel's birthday.

3) The cake should say "Happy first birthday, Laurel" AND "Thank you, TJMC." Argument for: Covers all bases. Argument against: Looks awkward.

There are also going to be some mylar balloons. Those DO say "Happy 1st birthday."

Help, what do you guys think? I need to order the cakes this afternoon...

Thank you SO much, everybody, for your input!! :-) 

Anyway, I'm so glad I asked you guys! I about whacked myself upside the head and said "Duh, of course!" at the banner idea! I've made them before but never even thought about it for this. Thank you thank you thank you!

We just found out that there's going to be a BLOOD DRIVE at church at the same time! It's going to be in the same room we were planning to be in (the only decent-sized room in the building). It wasn't announced in the bulletin or anything. Our church's administrator called Bob to let us know. I guess we will have to find some corner to try to tuck ourselves into. I don't want to try to reschedule - it's already been announced in the bulletin, people have told me they're looking forward to it, we were there first, and darn it, it's her birthday! I didn't want to compete with a blood drive, though! This really sucks.

HEY everybody! Thanks so much for all the birthday wishes for Laurel!

Gotta go, Laurel took a long nap but she's awake now so time to open gifts! Thanks again for the birthday wishes!

Way, WAY OT, but does anyone here know anything about hot water heaters? All of a sudden, yesterday and today the hot water ran out halfway through my shower. Before yesterday it was fine. It's true that our hot water usually runs out faster in the winter than the summer, but not THIS fast! It's not a very old hot water heater - I think we had it replaced 5 or 6 years ago. It's electric. I'm just not sure what to make of this, because it hasn't totally quit working, it's just working a lot less well than it was a couple of days ago. :-(

Man, lately it's been one thing and another! Thursday night I was driving home from a public meeting I had to staff, and all of a sudden the car stopped, wouldn't start and had smoke pouring out of the hood. Turned out the water pump had gone, to the tune of $450. Friday we got a notice that all of the co-pays on our medical insurance are going up. With Laurel's medical bills, we figure that will be another $100 or so a month. And just a little while ago, Bob called to let me know that he was at Sears having the tire on our other car looked at, because it was nearly flat (and since we're driving to PA tomorrow night and have to use that car, this isn't something we really want to mess around with). And Laurel seems to still be having some sort of intestinal problem, so my patience for all this other stuff is just not very high. I know there are bigger problems, heck, *I've* had bigger problems, but...arggghhh...

Laurel has been having SO much intestinal trouble since her last round of antibiotics ended 2 weeks ago - I need advice! We haven't been able to get her to poop without a laxative (we can usually last about 3 days before she seems to be in so much pain we can't stand it) and she is having even more gas pain than she usually does. We've tried simethicone and we think it might be helping her to pass a little more gas but she's still really miserable. I have heard of giving acidophilus after antibiotics - does anyone do this? How much do you use? And does anyone have any other suggestions? Thanks...

Laurel's still miserable! We talked to her doc last night. I wasn't all that happy with the answer, which was to give her more stool softener (Laurel usually gets a teeny weeny bit every day b/c she has a chronic constipation problem - I understand lots of tube-fed kids do). We usually give her 1/16 tsp (and even that tiny bit usually makes her stools kind of runny, but then she stops right back up if we don't give it to her at all), have been giving her 1/8 tsp for over a week though with no effect so my feeling is it's something else. The doc said to give her a whole teaspoon so we did that about 12 hours ago but still nothing. She also said she didn't think acidophilus would work but we could try it if we wanted to, so I bought some last night and we gave her that too (hey, the doc didn't think the Neocate formula would work either...). My guess is that would probably take a few days to work though. Anyway, she is just screaming again today so I'm not sure we'll be able to take her to the babysitter...Bob says he is afraid to give her any more Babylax for fear of her intestines atrophying and I think he may stay home with her today. I think if something doesn't happen soon, we'll probably have to take her in to see the doc.

Dang it all, one of Laurel's lullaby tapes broke long before we abused it enough! The only reason I got on the computer at this silly hour was to see if I could find an e-mail address to give Klutz Press a piece of my mind! Since I just finished the feeding and spent the last 5 minutes trying to dig the tape out of our player. But the good news is, Laurel finally pooped and she's starting to feel better! I guess this means the doc and Bob get to say "I told you so." Oh well...I hate being wrong (LOL), but not as much as I hate to see Laurel suffer. I'm just glad she's feeling better! Good night everyone!

OK, how pathetic is this?

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Actually, unfortunately, things have been kind of rotten all around. We took the worst vacation I've ever been on in late September/early October. I mean, it had its moments, but Laurel had an ear infection, the antibiotics made her throw up, our car was broken into and my backpack, camera bag and our cooler were stolen, and our flight was canceled and then delayed so we got stuck taking the redeye and driving back from BWI (a 3 1/2 hour drive) on 2 hours of sleep in the last 24 (and I think it had only been 5 or 6 in the last 48). It was pretty scary.

Meanwhile, I'm starting to feel like I'm getting things under a *little* control at work, but I know that it is going to continue to be a case of doing a full-time job on part-time hours and that the agency would be better off with a full-time person in my job. And my boss has been very understanding - but she's retiring tomorrow. The staff was one of the interview teams for the prospects, but most of them did not strike me as the sympathetic type and the man who I understand is in the lead struck me as particularly unsympathetic. So I'm starting to wonder what else I'd like to be when I grow up. I have some pretty good skills, problem is finding someone who is looking for someone part-time but willing to pay a decent wage for something that's more than just grunt work.

And finally, things just keep breaking around here! First it was the water pump on our '91 Escort, then a tire on the '99 Escort, then the hot water heater (that's still broken - there's SOME hot water, I think the deal is that one of the elements went out), then the tape player on the stereo in Laurel's room. We keep finding other ways to bleed money, too - we have just been informed that our insurance co-pays are going to be going up substantially, which will probably cost us another $100 or so a month. And our pediatrician is saying that it's time to move Laurel up to the 1 yr+ formula (of the protein-free, amino-acid-based stuff she's on now), which I know makes what she's on now (which we pay $240/month for) look cheap. I saw a story on the news about somebody whose daughter was on it and it was costing them $12,000 a year! Our pediatrician has written a letter to our insurance company but I doubt it will be any more successful than the one she wrote for the stuff Laurel's on now. (And I know the little girl on the news' parents didn't have any better luck...)

Oh yeah, and our cat Fuzz died. Her last cancer surgery fairly quickly proved to be unsuccessful, and after a slow decline over the summer it became obvious what we needed to do in September. Of course, we miss her terribly.

Oh yeah...my aunt died of cancer this summer too. At least I *did* get the chance to fly out and see her before she died (when I got word she didn't have long to live, I started making plans to go to her funeral and then decided I'd rather see her alive!). She was already in a pretty bad way by then though.

Could I just *be* any more of a little ray of sunshine? I am struggling to think what's happened that's been good...well, Bob did get an 11% raise this summer. That helped with filling the gap that's been caused by me working part time. I did get to see my sister a couple of times lately (I stayed with her when I flew out to see my aunt, and she also met us while we were on our vacation). We refinanced our house at 1% lower interest, no PMI, 15 year term instead of 22 years, and only $1000 in closing costs (bad news about this is it raised our house payment a bit - although the overall savings are huge). And...um...we still have our health? We haven't killed each other yet? (Although we fight more than we used to, and hardly ever spend any time together.)

Ugh...sorry I don't have better news for you!

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OK, am I totally pathetic or what?