Updates on Laurel: June 2001

Don't know if Laurel is sick or what, but we're about losing our minds here. She's been acting constipated, straining until she's red in the face and crying, for several days now. But she's NOT constipated - she's had at least one good poop every day! We called the doc on Thursday, and she suggested milk of magnesia. We've been giving it to her and Laurel seemed better yesterday, but miserable again today. And not only straining, but throwing up again - 5 times this morning! And this after a terrific week in which she'd only thrown up a couple of times the entire week. Of course, since it's Saturday, if we call the doc we'll just get the answering service at the hospital, and she doesn't seem like she's so bad she needs to go to the emergency room. I think. Wish I knew what to do, we are about out of our minds with cranky baby - and Laurel's not normally one to be cranky. (She really PO'd Bob off, though, by crying for an hour for him this afternoon and shutting up and going to sleep the minute I took her.) They've both been taking a nap...I think Laurel's waking up though...wish I knew what was going on or what to do!

Well, Laurel is doing a *bit* better today. We've been giving her simethicone and she's crying a lot less, but she is still straining a lot and has thrown up twice so far today. Not really a typical pattern for her - she threw up an *hour* after her first feeding, and the second one was what we call an "ambush barf" - no warning whatsoever, just spew! (Obviously she does this often enough that we've coined a term for it, but it's not really her normal pattern - usually she throws up within a half-hour of her feeding, and we get lots of warning and have plenty of time to aim her at the vinyl mat on the floor.) So we still haven't solved the problem, but at least she's in a better mood - she was playful this morning for the first time in several days, and had another "conversation" with Bob. Guess if this keeps up, we'll definitely have something to talk about with the gastroenterologist on Thursday...we made that appointment when she had still been really bad and were on the verge of canceling because she was so much better, but now I'm glad we didn't!

Well, I think it was the milk of magnesia that was making Laurel throw up! 

The only thing is, she is STILL straining a lot. We've been continuing to give her simethicone, and she's not screaming as much as she was, but she's still kind of cranky. So that's no fun, and I still wish I knew what the problem was! But at least she's not throwing up!

I am so mad at Laurel's neurologist! I have been trying to get in touch with him for over a week and now I've been told that he's gone to Germany for a week!!

The really irritating thing is, HE'S the one who told me to call! We were supposed to have Laurel's blood drawn and then call the next day to compare anti-seizure medication levels with numbers of seizures. The blood was drawn a week ago last Friday, and since that Monday was a holiday, I called a week ago Tuesday. I've called several times since then, was even ASSURED by his nurse that he would definitely call last Thursday afternoon - and now she tells me that he's left the country! ARGGHHH!!! Meanwhile Laurel continues to seize and we can't do anything to try and help her! I have had several people assure me this guy's a wonderful neurologist, and he is senior in his department (which is the only neurology dept. in town) - our pediatrician actually got us switched from one of the junior fellows to this guy so that Laurel could get the most expert help available in this town. But he only helps if we can talk to him! Again I say, ARGGHHH!!!!!!!

Laurel had a good appt with the gastroenterologist today - hopefully relief will be coming her way soon! He said that he thinks she's straining to try *not* to poop. Although she doesn't have diaper rash, the area right around her anus and just inside is VERY sore (she cried for at least 10 minutes after he examined it). He prescribed hydrocortisone suppositories. He also thought the straining was why she is still throwing up some (after I posted yesterday that she hadn't been throwing up, she threw up twice :( ), but said if she got better with the straining and was STILL throwing up, he would give her a stronger antacid (Prevacid instead of Zantac) because she does show signs of having some reflux, despite the upper GI not showing any. So, we'll get the suppositories today - I'm sure she won't like them, but hopefully she'll be feeling better soon!

Laurel ate 4 teaspoons of rice cereal w/juice yesterday!

Laurel was playing sort of a little game last night. I had her sitting on my lap, but with her back towards me and some distance from my body (we have been trying to get her to support her back herself as much as possible). She was turning her head to look back at me. First she'd turn to the right, then to the left. Sometimes she'd go from one side to the other slowly, sometimes really quickly. It was like she was trying to figure out how I got on *both* sides of her. She looked like she was watching a tennis match that was behind her! She'd do it for a couple of minutes, stop for a couple of minutes, and then do it again! It was really cute.

Well, the cradle era is officially over (although Laurel hasn't been in it for a couple of weeks) - Bob just took it to the basement and is boxing it back up. I feel sad, although on the plus side, our bedroom suddenly looks much bigger! :-)

Has anybody else's baby had problems keeping SQUASH down? Following the heels of our triumph with rice cereal, we decided to try a little squash. We probably got about a teaspoon down Laurel and then, since she really seemed to be losing interest and we've been told not to force the issue, we went on ahead and did her regular tube feeding. Well, she was SICK, SICK, SICK at the end of that feeding (this after a couple of barf-free days) and then later, she had diarrhea! I thought squash was supposed to be one of the easiest-to-tolerate foods there is! Now we're kind of worried...she can't live on formula, rice cereal and grape juice the rest of her life!

We ARE going to try the squash one more time, to make sure it wasn't just a freak coincidence...in another day or two, after we're sure she's recovered...

Our weekend was pretty good. On both Saturday and Sunday, we took Laurel out in her Snugli for short hikes! (About an hour) She seemed to enjoy the one on Saturday, but she was kind of cranky on the one on Sunday. Then she fell asleep midway through it! It was nice to get out, anyway!

Laurel is figuring out something 5 months too late, and I don't know whether to laugh or cry...

Last night during one of her feedings, I had my hand up by her head and she was turning her head and seemed to be trying to get one of my knuckles in her mouth. I offered her a finger, which she sucked enthusiastically (we have been trying to have her suck our fingers as part of her feeding therapy since early on, but she's only gotten enthusiastic about it recently). I told Bob and he said, "I wonder what she'd do with a breast?" My first response was, "What difference does it make?", but then I got really curious myself, so I got one out for her. Darned if she didn't turn her head, open her mouth and try to latch on! She tried several times (was practically lunging for it a couple of times!) and couldn't quite get it, but I think part of the reason was because my nipple has shrunk so much since I stopped pumping five months ago. I really feel like if she could have done this five months ago, with the help of a good lactation consultant I might have been able to nurse her. But, as Bob said, that ship has sailed. From what I have heard, relactation at this point is pretty unlikely, and at any rate would involve more time and energy (pumping frequently round the clock, etc.) than I have. So - I'm happy, because I'm happy any time Laurel shows evidence that rewiring is happening in her brain - but at the same time, I'm having a hard time not crying, because she now wants something that I wanted to give her and that I know would be good for her to have, but I can't give it to her now. Does that make sense? 

Add another to the list of amazing offers we have had on behalf of Laurel...

I'm again amazed and astounded at the generosity we have experienced on Laurel's behalf...between this and her attempt to breastfeed last night, I'm just kind of a ball of emotions today. Being Laurel's mom is a journey unlike I had ever imagined...

Please pray for my aunt as she begins her radiation treatments this week. Her liver cancer has now spread to her spine and legs. If the treatment does not work, she is only expected to live another 3-5 months...successful treatment will add another year to her life.

My cousin (who I spoke to last night) sounds exhausted, too. She lives in Minnesota but has been going out to see her mom in California about every 6 weeks. (I unfortunately doubt I will see my aunt again...) Wish we could have a Girls' Weekend Out, I think we could BOTH use it!

Laurel really varies with the solids and her feeding therapy in general - some days she's into it, some not. She was very interested in my breast again the other night but can't quite figure out how to latch on - and honestly, there's not much to latch on to, my nipples have shrunk quite a bit from when I was pumping or even when I was PG. I've been pondering calling a lactation consultant, but I guess I'm a bit embarrassed to since it's not so much that I really plan to nurse her. On the other hand, her feeding therapist was encouraging of the idea - she figures that anything that gets Laurel to suck is a good thing.

This weekend we went up to D.C., not really for Father's Day so much as because we had tickets to see James Taylor. On Saturday, we stopped by to see Merrianne (mags_66) and we did some shopping. Sunday, we went to the zoo for a bit, but it was pretty hot and Laurel was getting overheated (and all the animals, including the pandas, were asleep anyway), so we went to a mall. Then we went to the concert. It went well up until right at the end. When he started up for his last encore, Laurel decided ENOUGH WAS ENOUGH. But up until that point, she'd been really good. She happened to be in a pretty alert, attentive mood, and spent a good part of the concert practicing sitting up between my legs. We fed her there, and that went fine too. So all-in-all, Laurel's first concert was a success!

Oh yeah, James Taylor was good too. ;-)

Has anybody else's baby decided they HATE their carseat? Laurel was fine with it when she was younger, but now she has decided she wants to be FREE!!! Not that she can crawl or anything, but I guess she feels she can't squirm in the style she's accustomed to. Not only that, but she recently discovered the Joy of Shriek, so it sounds like we are dismembering her - the other day, we were in a parking lot and the people in the car next to ours were getting in when she let loose, and they peered in to see who was killing a baby. We've been calling her Mariah lately, because she can really hit the high notes! And there's really nothing for it but to let her cry it out, but it can be pretty heartbreaking. Does anyone else have this problem?

After 3 weeks, I finally got to talk to a neurologist, and I'm having trouble not feeling sick to my stomach...

Anyway, he told me the results from her bloodwork (3 1/2 weeks ago) and her EEG (2 weeks ago). Apparently at her last bloodwork her platelet count was HALF what it was at the previous bloodwork (2 weeks prior). So he wants her tested again this week before doing anything further with her medication, because he thinks it might be the medication causing it. EEK! That was 3 1/2 weeks ago, who knows how she is now, thanks for the timely follow-up! The one comforting bit of news there is he did think there might have been something wrong with the sample. I hope so! We are to have her re-tested on Friday. Then the EEG. That was when the sick feeling really started to sink in. This time her EEG showed hypsarrhythmia, a very disorganized brainwave pattern which I *thought* always meant a diagnosis of infantile spasms, which as I've said before does not have a very good prognosis - often incurable, often associated with severe mental retardation. However, he said that the movements she did during the EEG were not seizures! (Infantile spasms or otherwise.) This actually isn't good news either, since if they're not seizures, they're not treatable. I'm not sure I buy it, though, since those movements have decreased as we have increased her seizure medication. He also said that her brain is more severely damaged on the right, leading us to worry that a hemispherectomy may eventually be recommended. Anyway, we are just sick worrying about the implications of all this. We're also discussing second opinions again, especially given how much like dirt we're being treated here. Three weeks since a questionable blood test came back and not a peep from them.

Here's the scoop on Laurel's pediatrician appointment...

First off, the first words out of the pediatrician's mouth were, "Wow, she looks great!" We kind of lose sight of the big picture b/c we see Laurel every day, but the ped said that she thinks Laurel looks more alert every time she sees her. Laurel is holding right on her height and weight curves (27 3/8" and 15 lbs 10 oz, 75th and 25th percentiles respectively, as she has been from birth). Her head circumference is still way off the bottom of the chart, but still continuing to grow at a decent rate (it's now 39.3 cm).

The ped was in agreement with the idea of getting a second opinion from another neurologist. We've pondered our choices and decided to go with a doctor in Richmond (about an hour and a half from here) that was strongly recommended by two mothers in the Infantile Spasms group on Yahoo (one of them actually commutes from Maryland to see him). I've called and made an appointment - the first available was August 13.

One other thing we talked to the pediatrician about was supplementing Laurel's formula with DHA. I know someone on this board (I don't remember who) brought up the topic of DHA a while ago - it's an Omega-3 fatty acid that has been found to be one of the main chemical factors in why breast-fed babies score higher on IQ tests than formula-fed babies. More importantly for Laurel, it has been linked in studies with the ability to pay attention, and one of the mothers in the Infantile Spasms group reported using it with a lot of success - her baby is much more able to focus on tasks while taking it. DHA and another fatty acid, AA, are added to infant formula in more than 60 countries and were just approved last month to be added to infant formula in this country, but we suspect it will be awhile (if ever) before it shows up in the specialty stuff we have to feed Laurel to keep her from throwing up. So we asked about adding it ourselves (it's available in gelcaps, so we should be able to open those up and squeeze the oil into her formula), and the doc said she'd want to do some more research, but that she thought it would be probably be all right. So I expect we'll start trying that soon (she's supposed to get back to us within the next day or so).

Otherwise, we talked a bit about the fact that Laurel still wakes up sometimes with reflux (not actually throwing up, but coughing and choking), and the ped is supposed to call the GI doc back up and talk with him about that. We may go to a stronger antacid (she is still on Zantac, and we have lately been giving her Gaviscon as well). We also talked about which solids to try Laurel on next and she got one shot, hepatitis B, which will be her last until she's a year old. Yay! If only we didn't have to keep getting blood samples taken...we'll be going to get the blood sample taken for her platelet count to be retested tomorrow. We're supposed to have those results Monday afternoon. I'll certainly let you guys know what we learn!

Well, we don't have the results back from Laurel's blood test yet, but I think she's probably going to be OK. They had to give up on getting the blood out of her heel because it kept clotting! (They used a vein in her arm instead.) But that makes it seem unlikely that her platelet counts are very low! We'll know for sure on Monday, but I'm not so worried now. :)

OK, so it took 3 days, but Laurel has finished her first jar of baby food! Actually, she ate half of it the last day, so hopefully we'll start moving faster. Her feedings with the sweet potatoes just went fantastically well - she's opening her mouth for the spoon, closing around it (the upper lip aversion seems much better), getting the food off the spoon and swallowing it like she'd been doing it all along! The way she's been the last couple of days, I don't think she's actually that much harder to feed solids than lots of other babies. Anyway, I've got jars of carrots and green beans for her to try next!

Wish I could report that having her take liquids by mouth is going as well - but she seems to have kind of lost interest in the juice for the moment, so we're having trouble making progress. She gets hung up on coordinating her breathing with the sucking and swallowing anyway, and can't sustain sucking for long. We usually can't get more than about a teaspoon down her. Oh well...at least we are having fun feeding her SOMETHING orally!

Laurel is having her "button" - the port where her feeding tube attaches - changed today. The valve has been leaking really badly. We're leaving in a few minutes and I'm pretty nervous.- that it'll hurt a lot, that it might make her tummy sensitive and make her throw up for a while, and I don't know, I assume they use anesthesia? - that that goes OK. I really appreciate your thoughts and prayers!

Actually, as procedures go, it was not too bad. They use a little device that collapses the inside of the "button", and they pull the old one out and put the new one in fairly quickly and all while the baby's awake! She DID cry a lot, although on the torture scale, I'm not sure it was as bad as some of the other things she's had done. And I haven't fed her yet (I'm about to) and I'm a bit nervous, both that it'll stay down OK after her stomach was irritated like that and that it's going to REALLY hurt her to plug the tube in! It's still pretty bloody around there.

Anyway, thanks so much for your thoughts and prayers! I could still use a few calm baby/no pain/no barf vibes, but things are not too bad in our neck of the woods...

Well, we have gotten the results back from Laurel's blood test, and it is not good news. I mean, it's not life-threatening (so far anyway), but definitely not good. Her platelet levels have not risen from the test a month ago. They are not so low her blood won't clot (thank goodness given she just had a procedure that made her bleed!!!), but they are half of what they were initially and too low to raise this anti-seizure medication (Depakote) any further, since it is likely causing the problem (and her seizures are still very much not under control, although much better with the medication than without it). Because I only talked to the nurse, I don't know whether the doctor will want to move her off this medication altogether or not (although it kinda strikes me as a good idea). It does seem clear that her only hope of seizure control will lie with starting another medication, which I'm really disappointed about because so many of them cause drowsiness, and she had done well with this med as far as that went.

She's been getting through the day OK...had enough of a barf scare at the last feeding that it made our cat Fuzz quickly jump out of the way (smart cat), but it all stayed down except for a little spit-up. The area around her "button" is pretty tender, and she's been wanting to be held a lot (although lately that's often true anyway). But she's been hanging in there like the little trouper that she is...

I haven't been around much...yesterday I ran away for a day (called in sick to work and went for a hike) and now I need to get some work done! But I really appreciate your thoughts and prayers.

An e-mail this morning made me realize that everyone may not be aware that Laurel's seizures are an ongoing problem for us. I haven't posted about them for a while because things have been the same for weeks thanks to the fact that Laurel's neurologist never returns my phone calls (the last time it was THREE WEEKS of calling several times a week, and finally I spoke to a different neurologist!). The Depakote reduced her seizures from about 700 to about 50 in 12 hours. She is up to what would have been considered about 2/3 of the maximum dose if she weren't having the platelet count problem, so there was still some hope for control with Depakote, but not now I think. And she seizes every time she is startled (and it doesn't take much to startle her), and often it seems when she is trying to concentrate on something like sitting or reaching for a toy. She can sit up for several seconds now unassisted but then just about always seizes and falls over. I know she would be behind the other babies on this board anyway but I'm certain this is making it worse. It breaks my heart on a daily basis...

I am once again waiting for a call from the jerk, I mean neurologist, no, actually, I mean jerk. I have sicked the pediatrician on him this time, hopefully that will get a response. (That wasn't an option the first time b/c she had gotten married and was off on her honeymoon.) I am really furious over the treatment we're getting. It has now been over a month since her initial bloodwork that showed her platelet counts were too low and the jerk has yet to give me the courtesy of a conversation. I'm not even sure what I'm more angry about, him sitting on the platelet count or the fact that all of my messages have said, "Laurel's seizures still aren't under control, what do we do next?" and the answer is apparently to go $#^%!! myself. I feel like she's been written off. I am so glad we've got an appointment with a different neurologist but sure wish it was before August 13!

Anyway, I am (obviously!) angry but also just heartsick and tired...thanks again for all of your prayers and positive thoughts...maybe someday the light at the end of the tunnel will not be the oncoming train...

Today's rant: Insurance companies!

In other news, I finally heard from a nurse at Laurel's neurologist's office who informed me that they want yet another blood test. How many blood tests do these people need before they're convinced there's a problem? They've already had two a month apart that said pretty much the exact same thing (and the second one was using a vein, not a heel stick, so much more reliable in terms of platelet counts). Sigh...but of course, the nurse is just the messenger and you can't really argue with her. And the doctors won't deign to talk with little ol' me. So I guess we'll take Laurel over again in the morning...it won't hold things up that long, they'll have the results by Monday, but I am sure tired of gratuitous baby torture.

[Posted by Bob] On a positive note, Laurel is having a good day. Thursday is the day I stay home with Laurel. She has two therapy appointments at home. Her feeding therapist is in the morning and her physical therapist is in the afternoon.

This morning, she showed off her eating skills with some oatmeal. Her therapist is quite pleased. Lots of good opening and closing and swallowing. I also think Laurel looks like she enjoys eating.

She also had a good session with the PT in the afternoon. Her PT has had several rough weeks with Laurel where every time she would get here, Laurel would be in a bad mood for her (but calm down nicely for me - made me feel pretty good seeing her do that, though) and the sessions would be pretty useless. Today, Laurel was cooperative. Not exactly happy about being on her tummy, but she was calm in her anger, if you know what I mean. Letting us know about it but not getting too worked up or hysterical about it. She practiced sitting up (in her boppy). She was really good and stayed sitting up for several minutes at a time on one occasion. Her tummy time was also good. She pushed her head and chest up with her arms while keeping her legs and lower back loose making a nice curve in her spine that her therapist said she hadn't seen Laurel do before. Laurel tends to curve her spine in (flexion, as opposed to extension) much of the time - its clearly getting better. I also feel that when I carry her up by my shoulder (most with one hand) that Laurel is now helping stabilize herself. The therapist also noticed that.

All in all, a good day.

Our heat pump is leaking all over our basement! Please send some "cheap and easy problem to fix" vibes!

So now I have a bad toothache. Going to see the dentist Tuesday. Tell me things are gonna start getting better...

We have finally gotten some good news! Bob just got a $6500 a year raise!! WOOOHOOOO!!!! It was partly because where he works is trying to fix the imbalance between what they pay and what's paid in the private sector, and partly because his boss said he is doing a great job under difficult circumstances! Again I say, WOOOHOOOO!!!! We could sure use it!

My aunt has only been given at best a few more weeks to live...I just got off the phone with my cousin. She lives in Minnesota and we were planning to visit her when we're there next week, but she won't be there after all because she is flying out to California before she loses the chance to see her mother one last time. They have discontinued the radiation treatment she was receiving for her cancer because they felt it was doing more harm than good. Her legs are horribly swollen to the point that they look like they're going to burst. That happened to my dad, too, and he did not last long after that. Hospice has been called in. Bob and I are trying to figure out if I can be at her funeral, or maybe fly out to see her before she dies if she lasts long enough. She lives about 90 miles from my sister so I could probably stay with her.

Anyway, I guess for now all we can do is pray that she is as comfortable as possible before the end comes...and that she can meet it with peace...