Updates on Laurel: July 2001

July 2, 2001

[Posted by Bob] I think everyone must be on vacation. We leave Wednesday at about noon! We just spent the evening getting the house somewhat clean - we only clean for the cat sitter anymore. ;-) Tomorrow, we pack. If we take everything Laurel needs, will there be room in 3 suitcases for our stuff? By the way, Laurel is VERY CUTE tonight! Just wanted everyone to know that. We think it's beginning to dawn on her that she can entertain herself! And a few more near smiles (hard to describe).

Here's a little update on both me and Laurel!

Also, the heat pump cost $170 to fix. Not great, but not too bad! It was a clogged drain, and he fixed it so we should be able to deal with it more easily ourselves next time. Also, it turned out we were low on coolant (that was $40 of the charge).

And I just want to say, we are starting to think the craniosacral therapy (or something) is helping Laurel! Her back control seems a lot better lately, and her arms and legs somewhat better too. If you carry her with one arm under her butt, she can actually support her back and use her arms to steady herself! The only reason we need the other arm is to catch her in case she seizes. :-( (No, that's not any better - and believe it or not, her docs want to up her dose on the same medication even though it's lowering her platelet count. But we are putting the whole thing on hold until we get back from Minnesota - the last thing I want is to spend this trip in some strange hospital.) She has also decided that it's fun to kick her legs really really hard in her bouncy seat! I don't know if it's the motion or the toys rattling or what, but we're excited about it both because she has never been too good at entertaining herself and because of the leg control she is demonstrating. She also tried to pick up a rattle a couple of times yesterday, but both times the noise startled her and she seized and dropped it. :-( But it's still pretty exciting because we've never seen her try to pick anything up before! And she just seems a little more mentally present than she used to be. :-)

So, I just had to share! I should try to get some work done now, today is my only day at work this week! :-)

I hope I'm doing the right thing...very late last night I spent $300 on a non-refundable non-exchangeable ticket to Southern California, leaving Thursday the 12th and coming back Monday the 16th. I decided to try to see my aunt one last time, or at least go to her funeral...but it's such a gamble, she is VERY ill...I might get there in time to see her comatose, or even miss everything including the funeral. Problem was, the only way I could afford to go at all was to buy the tickets in advance and just hope (and it's not like we have spare $300s just sitting around, but it was a lot more doable than the $1800 it would have cost to fly on the spur of the moment). My cousin did tell me that when they mentioned to my aunt that I was talking about coming, it made her feel special that someone would travel so far to see her...so maybe that is worth $300 in and of itself, even if I don't actually get to see her. I will be staying with my sister so will at least get to see her.

And of course, I feel bad that I'm leaving Laurel and Bob...and I haven't even told my boss yet...

Just pray for me and for my aunt, that this works out.

On a happier note, Laurel's first plane trip (to Minnesota) is in 3.5 hours! Send some easy flying vibes our way, OK? I'll probably be able to check in a little bit on my FIL's computer, but won't really be around much until Monday! See you all then!

Oh, and here's one more happy (and slightly silly) note - I think my hair has finally stopped falling out! YAYYYY!

I looked at the giant pile of stuff we pulled out for Laurel and asked, "Are you sure we're only taking ONE baby?" LOL.

[Posted by Bob] We're here. Laurel was great on the two flights - slept much of the way ...

[Posted by Bob] Does a baby in the car seat qualify as the second passenger for the HOV-2 lanes? Laurel and I have to take Rochelle to Reagan National this afternoon so she can catch her flight to California to be with her aunt. Rochelle's flight is at 5:30 so we'll be coming back during the end of rush hour (yuck) when I think Interstate 66 is all HOV-2 out to the beltway. Will we qualify if its just Laurel and me in the car? The other question, obviously, is will I want to argue with the police office that pulls me over because he can't see the car seat or the baby in it. I have an active and vivid imagination (I actually got that as a fortune in a fortune cookie once). Sometime shortly after saying bye-bye to mom, I'll need to stop and feed Laurel, so I may just mosey back slowly and stop for dinner and feed her.

Quick update from me.

Update from me: my aunt, my cat, my baby...(another installment in my novel)

Meanwhile, it's anybody's guess whether Aunt Toni or Fuzz will go first. Fuzz is rapidly losing control of her hind legs, and I think when she is no longer able to walk, we will have to seriously consider putting her down. I've never had to put an animal down before...but like my aunt, she is still sassy. So I don't think the time is quite yet. We have to keep giving her antibiotics though, else the tumors get infected and bleed and smell.

Coming home was kind of a jolt...somehow Laurel seemed worse than I remembered her. She didn't even seem to notice that I was there. I think part of it may have been that she was very distracted by the airport, because once we got her home and were sitting quietly with her she looked from one of us to the other and seemed very excited. The one exciting thing that did happen at the airport, that I'm still not convinced I didn't hallucinate, was that while Bob was getting my luggage and I was standing with her saying "Hi Laurel, hi sweetie" I swear she said "Hi." Twice. But she generally doesn't try to imitate, so I'm still not sure I really heard it! Last night when I was singing a song to her that had "I" in it, though, she said "I" too (where she had mostly otherwise been saying "ah" and "eh" and "uh" - she can be pretty vocal, although she's not big on consonants). So maybe I'm not crazy after all. She is actually, despite my jolt, doing better. We are very excited about the fact that she is learning to stand (with support) with her ankles bent and her feet flat (her ankles used to be too stiff for that) and consciously using her muscles, not just reactively using her excess muscle tone to lock her legs straight (I hope that made some sense). Also, lately it has seemed that she has very few seizures that aren't the result of startles, and that she is not as easy to startle as she used to be (now sometimes we can actually start talking to her without setting her off...). So our sense is that she's having fewer (also weaker) seizures, although we haven't counted them lately. This despite the fact that we have YET to talk to a neurologist. We have an appointment next week (that was set 2 1/2 months ago, the last time we managed to talk to anybody who did anything more than order another blood test), but we are so fed up with this neurology dept. at this point I'm not sure how much we're even going to talk to them - we may just mostly hold out for the doc in Richmond next month, since she seems to be improving all by herself (or maybe as a result of the craniosacral therapy - but definitely through no action on the part of her neurologists!).

Oh, and Laurel's doing about the same feeding-wise...we do one or two solid-food feedings a day, and depending on her enthusiasm, she'll eat 1-4 teaspoons at each feeding. So far she's liked just about all the solid foods she's tried (although they didn't all like her!), except the garlic mashed potatoes that Daddy tried to surreptitiously feed her once when Mommy went off to the bathroom (if we had doubted that Laurel could push food out of her mouth if she didn't really like it, that took care of that doubt). And she usually sucks down a teaspoon or two of juice a day. Her feeding therapist is generally quitting private practice and going to work for the schools, but she's planning to keep one client - Laurel! Her previous therapist (who also went to work for the schools full-time) said that she was one of her hardest clients to give up, too. :-) And Laurel is still doing well overall throwing-up wise, although she does it once in a while just to keep us on our toes!

So, I think that nearly concludes the latest installment in my novel. I've been kind of depressed lately, and Bob has been urging me to see a counselor...I can't decide whether it would help or not. Getting away didn't help as much as I'd hoped - not that visiting one's dying aunt is exactly a non-stressful activity, but I was hoping to at least catch up on my sleep. I didn't sleep well, though (partly 'cause the bed kinda stunk, partly it being a strange place, partly who knows...) and then, like I said, somehow it was harder to see how Laurel is after I'd been away for a few days. I don't know...part of what is stressing me is lack of time and sleep, so I am worried that chunking up an hour a week with a counselor and possibly going on antidepressants (I had horrible trouble sleeping when I took them before) wouldn't help much! I'm not sure what to do. Guess I know now though that I should get back to work, since another thing that's been stressing me out is how far behind I am at work! Sigh...

How many hours of sleep do you get a night? I get about 5, and I'm exhausted to the point of tears. But Bob tells me that's pretty normal and will be for years to come (I guess he gets about 6-7 - part of the problem is, I seem to take *forever* to get ready for work in the morning, so I need to get up at nearly the same time he does even though he does the morning feeding, but I do the last feeding of the night so I have to stay up later). I don't know how much longer I can go on like this, but I guess I'll have to. :-( Then I wonder why I can't focus at work...

[Posted by Bob] I just got off the phone with Rochelle. She's been reading the board today but unable to post because Laurel has been in a real mood today. Laurel just doesn't want to be put down. She gets hysterical when Rochelle tries. We think what is going on is constipation, leading to extra reflux, which in turn is making the constipation worse because her poor butt is getting very sore - i.e. it's all a vicious cycle.

Rochelle talked to Laurel's gastro-intestinal doctor's office (the actual doctor is on vacation, but the nurse there was apparently very helpful) and she recommended Senekot, which apparently comes in a liquid form and either baby lax or an enema (what fun) to get things moving now. She also approved us increasing her dosage of the antacid we're giving her (who's name escapes me right now - daddy brain strikes again) so that should eventually help. And we're getting another prescription for hydrocortisone suppositories to help her butt feel better if we think that will help.

On top of that, Rochelle thinks there might be signs of teeth coming in.

So, Laurel could use calming vibes and Rochelle could use some "we understand your frustration, but please don't use the duct tape to keep Laurel from screaming" vibes (i.e. she needs some extra amounts of super-mom patience right now).

Bob has her for a little bit, so I'm typing quickly! She's still pretty miserable, but she did just finally poop. A few more of those, and the hydrocortisone suppositories and increased Zantac dose, and hopefully in a day or two she'll be feeling better. I can't tell about the teething - I thought earlier I saw a red spot, maybe even a little blister on her lower gum on the left side, but now she won't let me look at her gum - sticks her tongue out every time I open her mouth! And she's too miserable otherwise for me to want to torture her much that way. I couldn't type earlier because, not only would she not let me put her down, she wanted to hold my finger (she does that when she feels bad - kind of frustrating after an entire day of it, but I think it's so sweet!) and she got fussier every time I tried to look away from her and do something else, even if I was still holding her. Oof, this has been a wearing day, though! Thanks for all your positive prayers and vibes!

UGH - Laurel just finally fell asleep a little while ago. What a day! Here's to tomorrow being a better one. 'Night all!

I've been meaning to say THANKS to all the people who posted to me about sleeping last week. Bob offered to take the last feeding a couple of nights a week. Hopefully that should help! He's supposed to take it tonight - I'm really looking forward to it. :-) Miss Laurel only slept from 2:30 - 6:30 last night. :-( Her constipation is better though. Her babysitter also thinks there's a red spot on Laurel's gum, so hopefully we will see a tooth soon!

We reviewed Laurel's early intervention plan today, and she made all but one of her physical therapy goals to date!

Her feeding goals were more mixed - some met, some not. The therapist had wanted her to bring her own hands to her mouth, and she still won't do that (although she's much better about it when we do it for her). But she has met the goals of swallowing small amounts of liquid and being able to suck on a pacifier (she still doesn't sustain it for very long, though). She also can eat a couple of tablespoons of solid food a day, which wasn't even in her goals!

It's amazing how far Laurel has come! When we first brought her home, I despaired that she would ever sit up. She spent long periods of time with her back arched, staring at nothing. That doesn't really happen any more. Both of her therapists commented today that they thought Laurel's vision was improving, too (her eyes are structurally fine, it's the connections and processing in her brain that took a hit). She has been making better eye contact and just seeming to look at things more than she had been. For instance, I read to her often, but until lately, she seldom looked at the books.

I think it's time to thank you all again for your thoughts and prayers - they seem to be helping!

Well, Laurel's neurologist appointment went well too!

Anyway, the neuro said that, although she still has a long way to go, she has definitely made a lot of progress! Even though she was pretty sleepy, he could see that she looked better than the last time he'd seen her. It was decided to keep her seizure medication the same. Her platelet counts seem to have stabilized and Bob and I think her seizures have actually gotten better without any change in the medication! A couple of months ago we felt like she had taken a turn for the worse - her seizures were starting to come in clusters again, and she had started having these spells where her eyes fluttered rapidly, that one doctor who saw them thought might also be seizures. Well, she is not having either of those things any more. It's not even clear whether she is really having seizures at this point - she still has movements that look somewhat like her seizures when she is startled (and she startles very easily), but she did several at the neuro's office and he thought they might really just be startle reactions that are asymmetrical because her muscle tone problem is asymmetrical (and babies with brain damage often have the infantile startle response much longer than normal babies). He said that babies with vision problems often startle more easily. That might explain why we feel she has gotten somewhat less startleable in the last couple of weeks, since (as I said in my earlier post) we feel like her vision might be starting to improve. The neuro said that there is still a reasonable chance for considerable visual recovery. He also said it's possible that it *won't* happen, but at least we know the chance is there!

He also said that he thought her last EEG actually showed some improvement, in that the area with bad brain activity (I feel stupid putting it like that but CANNOT remember the term I should use) is more localized than it was.

So overall, it was a good visit. I was WAY more polite to the man than he probably deserved. We are still going to go for the second opinion on August 13 - it would still make me feel better to hear from another doctor that we are really doing the best thing for her right now. But for the moment anyway, things are looking up. :-)

Last night Laurel gave me another little demonstration that her eyesight must be getting better. I was beeping her on the nose (don't ask me why I keep doing this when it mostly seems to annoy her slightly - I guess it's just too cute a nose not to) and she saw my knuckles go by, lunged for them and got one in her mouth! She looked VERY pleased with herself.

Just another little sign she's getting better... :-)

I think *maybe* Laurel kissed me this morning! Bob was having trouble getting her to settle after the morning feeding (she usually goes back to sleep right away), so he brought her in and laid her next to me. She turned her head, pressed the lower half of her face against my forehead, and then her lips did *something*! Then she turned back. The funny thing about this is, she makes a stinky face every time we kiss *her*! (Which we do pretty often anyway.)

This is the second time in a week she's done something cool when we were in bed together, though. A few nights ago, I couldn't get her to sleep after the last feeding, so I put her in bed in the middle and then laid down. She squirmed over next to me, put her arm over mine, and then stuck the top of her head under my nose! Of course, I can't breathe baby hair very well so I moved my head - but she just moved hers. Finally after a couple of rounds, we settled with her head under my chin. She is such a sweetie! (If I do say so myself, LOL)

Has anybody else's baby ever gone through a phase where they seemed really worried about falling? Lately Laurel gets really panicky whenever she changes hands or gets put down. She grabs on as hard as she can (OUCH) and often cries. But after the transfer is complete, she's OK (at least about changing people - she's not wanted to be put down much lately anyway). I'm wondering, is this a phase normal babies go through, or another of those fun brain-damage things? I hope either way she'll get over it soon!

I still hardly believe it, but Saturday night LAUREL ROLLED FROM BACK TO TUMMY!!!

BTW, she did well at the fireworks too. She startled at a few of the really loud ones, but mostly she watched pretty intently. She also weathered her first cave tour pretty well on Sunday (it was raining too hard to do anything outside, and there are not a lot of great indoor activities in eastern West Virginia). She did have a few comments to make though, prompting the tour guide to offer to give her the flashlight and let HER lead. Her voice carries really well, so I bet she could have done great, if only the tour group members could understand what "ehhh-AHHHH!" means! :-)

So all in all, a big weekend for Laurel!

And just to prove it wasn't a fluke, Laurel rolled to her tummy again!