Follow by Email

Thursday, May 31, 2012

The Days Blur, The Day's Blur, The Daze Blur

You can relax later.  We've got a schedule to keep!
Another busy day.  


Leslie and I took Lily to her special magic autism doctor.  Her appointment was at 5:00.  If we finished quickly we could still drive across town and catch the start of Emma's softball game at 6:00, or possibly catch some of it at least.


I left work early to meet them at the doctor's office.  When I got there, Leslie had Lily in the back getting weighed and measured.


"How much did she weigh" I asked after greeting them both with kisses.


"34 lbs," Leslie replied.    


I shook my head.  "That's lighter than last time, isn't it?  What'd she weigh last time?"


Leslie shook her head tiredly.  "I think it's lighter," she said, "but I didn't ask about last time."  


We crossed the room and took seats in the waiting area.  Leslie told the nurse we needed to be somewhere at 6:00 if they could get us in sooner rather than later.  The doctor is busy though, and the people before us got there late.  It was 5:15 already.


Lily was being so good.  She sat at the little table in her little chair and leafed through little books.  She finished with one before moving on to the next rapid-fire, flipping the pages to the end before flinging the book aside for a new one.  


"Lily, pick up the book and put it away, baby," I said.  She walked to the book and picked it up from the floor, plopping it on top of the bookcase in the doctor's waiting area.  Good enough, I thought.  She picked up a new book and started looking at it.  Standing and looking at books is bad business.  When she stands to look at them, they end up ripped, so we told her to sit, and she did.


I looked at the clock.  It was 5:30.  I walked over to the sign in sheet to see when the people before us got in for their appointment.  In the leftmost column is a name, in the middle column is their arrival time:  4:20, in the rightmost column is their appointment time:  3:30; 50 minutes late.  So, because these assholes can't get to their appointment on time, we're going to pay the price, apparently.


"I'm going to tell her if we can't get in in the next 15 minutes, we'll have to reschedule.  Does that sound fair?"


Leslie agreed and I wandered over to the receptionist to let her know.  She told me she'd inform the doctor.


10 minutes later our appointment started.  


He's a fast talker with all the numbers in his head and he referenced half a dozen studies and three "international" conferences he attended in the past six months since we last saw him.  He started asking questions.  I got the distinct impression, as I did the last time, that Lily is jumbled together with other kids being seen at this busy practice.  He asked things like, "is she on any supplements yet?"  In fact, she is.  She was six months ago when he saw her too.  And six months prior to that.  


He added things to her supplemental diet again.  I spoke up, "She's not a spectacular supplement taker.  Is there any way to combine some of these things in a single pill or liquid?"  He consulted his notes and added something else instead.  Four new supplements to bolster the four she's already taking.  Outstanding.  


"It's the consensus of autism treatment doctors," he told us.  


"We'll give it a try," I reassured, after explaining that our big concerns with new supplements are her sleep and appetite.


He asked another question that made me wonder if he had any idea who Lily even was, "Is she still eating well?"


I look confusedly at Leslie.  "Still eating well?  She's never eaten well." 


He attempted to clarify, " when you first started seeing me she was eating well."


"When we had the old TSS she could get her to eat pretty well," Leslie offers by way of rescue, "but she cycles in and out of foods, so sometimes she likes things and sometimes she doesn't."


I've gotten impatient with the question though, probably because regardless of why he's asking it, it makes it seem as if he isn't really paying attention, "No.  If the baseline of her eating is when we started seeing you then no.  Her eating has gotten steadily worse since we changed wrap services.  Yes, her food preferences cycle.  She'll go months eating a preferred food and then she'll hate that food for months and not allow it past her lips.  But regardless of what her preferred foods are, she is not eating well."


Then he said the one thing guaranteed to set my wife off.  It's a testimony to how overwhelmed she is that she didn't jump over his laptop and start bludgeoning him with his office chair.  "You need to get more volume of food in her," He said.  She just looked at me.


No shit.  No fucking shit, doctor.  He saw the skeptical look on my face.  "You think I'm crazy -," he began.


"No," I interrupted, "I don't think you're crazy.  We completely agree.  And if we COULD be getting more volume of food in her, believe me, we would.  We keep feeding her until she resists, and then we continue past that.  It's not like we cut her off when she reaches some limit.  We want her to eat.  But we'll sure try."


"Does she feed herself?" 


"No.  Not really.  Finger food."


"I really encourage you to get her feeding herself."


Again, my skeptical look startles him out of whatever theoretical playbook he's reading.  "We're back to the age-old question, Doctor, which is more important:  teaching her to feed herself, or getting food in her?  You have her weight from the last visit?"  He nodded at this, looking at his laptop screen and I continued, " She weighs 34 pounds now.  I'm almost positive that's less than what she weighed six months ago."


Leslie added, "When she feeds herself she's even less likely to eat well."


He made a point that kids often fight being fed because it's a control issue.  We understood.  "But," Leslie offered, "she can't really hold the spoon or fork properly to get the food in her mouth."


Lily cheerfully continued perusing the books in the doctor's examination room, moving from one to another to another until she started the process over again with the first.  She periodically glanced up to say, "Hi doctor," and giggle shyly before returning to her page turning.


The clock ticked by and we exchanged questions and answers, suggestions and prescriptions.  It was 6:30.  Emma's game had started.  It was a thirty minute drive, but we might still catch the last inning or two if the appointment ended soon.


But it didn't.  At 7:00 we left.  We had a prescription for a baseline EKG (EEG?  I always confuse the two), A referral to a nutritionist, a referral to a vision therapist, a recommendation to visit an allergist, a plea to visit the audiologist (for baseline hearing test for her file), four supplements and a push to get her to feed herself.  More appointments, more stress.


In the meantime the game was over, Emma's team lost.  We missed it.


Tomorrow at 3:00 we have an appointment with a pediatric psychiatrist to look at possible medications to control impulsivity.  When we brought this up with our autism doctor, he seemed put out that we weren't using him to do that, but I can't worry about his feelings.  


At 6:00 we need to get Emma to the school for her Orchestra recital.  


Friday is Emma's dance recital at 7:00, she'll need to be there by 6:00.


Saturday?  I'm not really sure. . . I can only keep track of about two days at a time anymore.



49 comments:

  1. This is the suck, Jim, and I'm sorry. Too many times, we have to choose between doing something with/for Helene or doing something with Nate, and Nate nearly always loses by necessity. You feel damned either way, and it is a horrible, miserable feeling, even when Nate (who is 10 years older than his sister, who is nearly 5) says it's okay. Actually, his truly understanding may even make it worse, because I hate that he even has to.

    Does Lily have to keep seeing this doctor? For all the people at Helene's school I'd like to throttle sometimes, we've been blessed with a pediatrician who is pretty awesome. We've tried a few "autism specialists," but some of the things they've suggested as "therapies," "treatments" or even "cures" have made me seventeen shades of purple holding in my anger/frustration. So, I hate to suggest doctor shopping, but maybe it would help?

    FWIW, Helene is not a good eater either. She chipmunks food (sometimes for HOURS). We did discover, though, that she'll eat a wider range of foods if she doesn't have to chew them. So we spend the equivalent of Greece's economic debt on pureed fruit/vegetable pouches, which we mix with baby oatmeal sometimes, and which Helene will actually eat. You've probably tried this, but I thought I'd put it out there.

    Otherwise, I feel for you. I really do. If there's anything I can do, I'd gladly try.

    ReplyDelete
    Replies
    1. Have to? No. All the stuff I wrote above does irritate the shit out of me, but he is highly recommended, and very dialed in autism-wise. If we ever get to the point where I feel like he's not doing what I need him to do (i mean apart from inconveniencing me or pissing me off) we'll leave and go somewhere else.

      For so long we just wandered from place to place directionlessly. He's actually attempting to "manage her care". Sometimes Leslie and I need that. I like that he has genuine opinions about what should be done, as opposed to her pediatrician, who just says stuff like, "she'll eat when she's hungry" or "she'll develop at her own pace".

      Lily stopped cheeking food. . . now she gags until she throws up. I think I'd prefer the cheeking. . .

      Delete
  2. OH! i am so ANGRY at your stupid doctor! he sounds like a TOTAL ARSE.

    i agree with prof mum. if he's not helping he seems to be hurting, and you are probably just as well informed as he is about the technical stuff, and certainly better informed about lily. a smart GP (regular doc - general practitioner in the UK, do you use that term?) can be of more help than a self involved smug git of a specialist. it's the same with anything.. i am of the same opinion about the psychiatrists and migraine specialists that i see. if they are not helping i stop seeing them and lean more on my GP.

    ReplyDelete
    Replies
    1. We're not thrilled with our pediatrician. . . for LILY. He's perfectly adequate for Emma, but he's just not the guy to handle Lily's overall care. See my comment do Profmomesq above. . . I was irritated by our appointment yesterday, but he's not all bad.

      The biggest problem with doctors is that about the only way to determine if you have a good one is to go SEE one. And how long do you stay with a doctor before you figure out that he sucks or is awesome? If he sucks, do you go to another? Is it productive to leave even a mediocre doctor to flit to another who is completely ignorant of your daughter's history?

      Parenting is hard-ass work, yo!

      Delete
  3. I hate that the doctors can't even take the time to review the chart even a little bit before entering the room to make it sound like they at least somewhat remember the kid they are seeing. We have been blessed with an awesome pediatrician. Unfortunately, he is retiring next month. He has a new doctor taking over his caseload. I'm hoping she is as good with Katie as he is. We shall see. I'm sorry you had such a craptastic appointment. Who can I kick for you?

    ReplyDelete
    Replies
    1. No kicking! I don't want you getting in any trouble, plus I doubt Katie would approve.

      Delete
  4. Okay, kudos to you for not walking out on this guy. I don't care how many conferences the dude has been to, people who understand autism would never say "I really encourage you to get her feeding herself". There is so much about that sentence that is wrong, and nothing that is right. Or encouraging, even.

    As far as the eating thing goes, if it's any consolation my son ate almost nothing but crackers for 12 years. He's tall and healthy and has had one cold in his entire life. Long ago I pushed the food issue way down on our priority list and a funny thing happened - we all became less stressed and we had more energy to focus on getting some of his other challenges sorted. And as he became less anxious about the world around him, he started to try new foods. We're still only up to maybe a dozen, and he pretty much eats the same things every single day, but he eats. Do I wish he ate a wider variety of things? Of course. But in the scheme of things, we have bigger fish to fry (none of which he'll eat, of course).

    ReplyDelete
    Replies
    1. haha. . . you're funny (re: fish to fry that he won't eat).

      It actually IS a consolation. I've heard lots of stories about extremely picky eaters who would ONLY eat nuggets or ONLY eat cheese or whatever. The didn't wither away to nothing, and that IS a comfort. Still stressful.

      Both Leslie and I were very little kids. I was 6' tall and 150 pounds in high school. BOTH kids are little bitty things. Genetics play a roll in her tininess that I sometimes forget.

      Delete
  5. Wow. Um, time for a new specialist?? That's easy to say over here, but seriously...he doesn't seem to be doing much for Lily...and he's just making you & your wife irritated.

    We see a separate psychiatrist for my son's ADHD. He is on meds for focus/less impulsiveness. They are working. They suppress appetite. Make sure your psych "gets" the food struggles. There may be non-stimulants you can try first with Lily that don't have the appetite suppression side effect.

    I hate the schedule issues...and often, my older son doesn't have me around, either...because we're handling something for Tate. *sigh* The juggling can be exhausting.

    ReplyDelete
    Replies
    1. I was irritated when I wrote this. He does some good things for Lily. But some of the things he does irritate me. I wrote a longer explanation in my response above.

      One of the nice things about knowing that he prescribes drugs is that he can direct us to what he thinks would work for Lily, and we can ask about that with the developmental psychiatrist today. Non stimulants is where we're heading (if at all). Someone suggested Risperdal and the doctor last night said HE thought that might not be a good fit and would suggest Tenex. Risperdal has the side effect of possibly increasing her appetite, so that seemed like a plus. He mentioned some other side effects when we brought it up that seemed not so positive.

      Can I ask what Tate takes?

      Delete
    2. We had my oldest on Risperdal for a while. It definitely increased his appetite. He gained 20 lbs on it, but he was having some trouble sleeping, and was very zombie like. It might be worth a trial, but it is a REALLY strong med with lots of muscle side effects. Not generally a good first course med.

      Delete
    3. sleep is VERY important to us. I think it was sleep that he mentioned to us.

      Delete
  6. You've got me mad enough to swear.. I mean W.T.F.?!!! Little Miss is in the same boat with Lily on the eating. She finger feeds (when she's willing to do it herself) and otherwise, we feed her. Sometimes we even resort to finger feeding her bite by bite while rocking her on the rocking chair (rock, rock, bite...) It is the ONLY way to get food into the child.

    You need to get more volume of food in her? Ack. What a dumbass.

    It really sounds to me like you need a new doctor. Your concerns are not being taken seriously and this jackass is wasting your time. I got a couple names if you're willing to drive to Cleveland... but there should be SOMETHING there in PGH too.

    P.S. We tried the nutritionist route too. Another colossal waste of time.

    ReplyDelete
    Replies
    1. Yeah, we've already done the nutritionist thing. . . but it wasn't THE nutritionist. So he recommended someone else.

      He really is supposed to be "THE" doctor in Pittsburgh. We'll see. He's not all bad despite what the blog above indicates.

      Delete
  7. This makes me want to punch the fucking doctor. (And swear on your blog, too, apparently. Sorry.) I have so many thoughts on the issues you discussed with the doctor but don't want to load you with "try this...try that..." without your permission. (I know I get annoyed when people do that to me.) Instead, I will tell you that my son has *always* been underweight (weighed 18.3 oz at birth and has stayed around the 3% his whole life) and loses weight a lot. We found some things which worked well and did NOT involve trying to force his body to eat more food than it wanted or could tolerate. I am happy to share our journey with you if you are interested. Contact me via FB or email? (For some reason, your blog won't recognize my WP login. It's me, Niksmom! Beth.)

    ReplyDelete
    Replies
    1. haha. . . you WP login? Perhaps it's because this is a blogger blog. . . not a wordpress blog?

      Do you have it already written? Like in blog form? you could link me to the stories and I could read up. Otherwise I'll shoot you a direct message on Facebook.

      Delete
  8. I can only keep track of one day at a time and even then it's questionable....I so want to choke this guy on his own spit about the feeding issues. Get a effing clue. There, now I'll shut up as I can see from your comments this guy does have some redeeming qualities.

    There are so many facets to Autism, so many....you're a good dad and one hell of an advocate for Lilly, you know that?

    And yeah, I've missed so much with my other kids to get things squared away for Alex. The gilt that comes with that is heavy...I've learned to live with it but I'd be lying if I said I was OK with it.

    ReplyDelete
    Replies
    1. Lots of balancing happens, and for every event missed with Emma, there are three that Lily can't participate in because of her own issues. One thing that seems pretty equally balanced though, is guilt. No matter who we choose to screw over, we always know the guilt will be there to comfort us!

      Delete
  9. Gah! I understand the scheduling thing on so many levels, and I do not have an autistic child, or even a child requiring additional appointments with specialists, etc.

    Which is a good segue into the mess I'm about to step in-- since I really shouldn't have an opinion, as I do not have an autistic child-- but why? Why are you doing this? I understand the man comes highly recommended, and that he is attempting to manage her care in a way that other's have not done before, and that he attends conferences... but his inability to keep on schedule (with autistic children! I've worked in an autistic classroom before! I know that schedule can be everything!) and cannot remember what supplements she's on, and then prescribes her four more (to total of eight-- which is scary), and then chastises you on what you "should" be doing? WHY? I don't care how 'good' he may be, or how 'bad' the others may be; I don't think this is good for the three of you. What if he, in his haste, prescribes supplements that counteract one another (or the other meds she may be on)? Why can he not save everyone some time, and say something like: weight is down-- tell me what you've tried, to date, and let's see if I have any additional ideas or tips for you? Or, perhaps, even, asking you about your concerns in the appointment. You two are the specialists when it comes to your child. He should be facilitating you, and not the other way around.

    I will admit by bias here as well, and tell you that I am not a fan of the supplements, or anything outside of behavior modification, really. I know that many will disagree with me, and that's okay. You have to do what you feel is best for your child. I just get really sad when I hear about these specialists dumping multiple vitamins or meds into these kids when what I hear when I read this is that you need a TSS or more time with the TSS!

    Okay, I'll stop interjecting my opinion now.

    ReplyDelete
    Replies
    1. Lily does require SOME supplements regardless of whether they're to 'treat' her because she's such a picky eater.

      As far as he goes, we're not just on board his autism treatment boat floating down the river of his whims. One thing I'll give him is that he DOES seem to listen when we tell him we think one of his ideas is far-fetched or won't work for Lily. He doesn't seem to just talk over our objections, he listens. I think from his perspective, all of what he's telling us to provide Lily is supported by paper and peers. His, "consensus" is what he's pushing for the patients under his care. He's also indicated that as we try the new supplements (he's told us which should have ZERO side effect, and which may. . . and what they may do) we're to eliminate any that impact Lily in a way that we think it's positive.

      Your opinion is always welcome. Interject the hell out of it! ;)

      Delete
  10. Jim,
    I am sorry your doctor is an asshat, but maybe there is another specialist that can provide the same things and also keep track of which patient he is seeing? We tried a few pediatricians in the same practice before we decided to stay with the one we have. She isn't an autism specialist, but she writes the referrals just the same.
    I know it is hard to relax about food issues, especially if your kid is losing weight. My Random Guy was at 90% in height and 50% in weight when he was a preschooler. Now he is 95% and 85% so it does seem to get better as they grow.
    To get some perspective on the doctor thing and the need of having to do something for your child, as a parent, have you seen Loving Lampposts? Sometimes it helps to have some perspecive to be able to relax with it all.

    ReplyDelete
    Replies
    1. there's no amount of reading I'll be able to do that will let me relax on this one, I fear, but no, I've not seen "Loving Lampposts". What is it?

      Delete
    2. Check out the movie, it is available on Netflix. My husband found it helped him worry less. He did need to see it in small doses, since it does contain some interviews with hacks, which upset him. Hope this is helpful: http://lovinglamppostsmovie.com/

      Delete
  11. It is hard to be everywhere..but we try and no one can do more. You are dedicated father and I I am very sure your daughters know.
    Guilt is a hardy plant.

    ReplyDelete
  12. We don't have a magic Autism doctor, or do any of the supplement/diet stuff, so I haven't dealt with this end of things. Doctors, all doctors, are egomaniacs with very poor personal skills. They also think they know it all, and think anyone who questions them is brain dead, or something. I am still laying here, back on freaking crutches, bc a surgeon didn't actually think of ME, and went ahead and did something that has screwed up my life and summer plans. If doctors THOUGHT about their patients, things would be a lot different.

    Right now, a lot of the people we actually see are NP's, who are super nice, and make the time to talk with us, email us, etc. We avoid actual MD's when we can.

    I also believe there needs to be a late cutoff. 50 minutes? Are you kidding? I have friends who are pathologically late for appts, just bc they NEVER plan well, and then expect their dr to see them an hour after their appt. That mindset I don't get, either. I always leave us way too much time. I would rather sit there for an hour waiting, than be late.

    If you don't like him, is there anyone else? Or is this one of those drs that only exists few and far between...

    ReplyDelete
    Replies
    1. There's some speculation that this particular doctor is perhaps on the spectrum himself. I don't DISlike him, but there are definitely some areas he could be working on.

      Delete
  13. Sorry I'm so late. No excuse, other than work and life are not being friendly this week.

    I have a number of these doctors. They mean well. They just don't seem to know who I am, and say stupid things like "wait it out!" or, if I'm hurting, "have you tried ibuprofen?" or, if I can't sleep, "have you tried going to bed earlier?" Um. Yeah. Yeah, I've tried things that are common sense. Thanks! FIX ME. It is YOUR JOB.

    But you say he's good, and you were just frustrated, so I'm going to take you on your word. You're a smart guy. You know what's up. You wouldn't be taking her to a yahoo.

    And don't beat yourself up too much. You are a great dad. Both your kids know that. Your wife knows that. Now YOU need to know that. I don't know that I know any other dad who cares about their family as much as you do. I do the guilt thing, too, I get it. But it sucks. And, in your case, it's completely unwarranted.

    Hope things calm down soon. You can harass me to let off steam if you want. It'll only hurt my feelings a LITTLE bit. I can take it.

    ReplyDelete
    Replies
    1. Listen. . . I don't time you. As long as you show up and comment, you'll still keep your job here at Just a Lil Blog. Whatever that might be.

      Hurting your feelings is not currently in my stress-management plan, but I'll let you know if I need to dig deeper. . .

      Delete
  14. I'm not going to go on and on because it'll just be a repeat of what's already been said. Parenting is hard work, special needs makes it even harder. All we can do is the best we can do, right???

    ReplyDelete
  15. My son fell off the growth charts as a pre-schooler. He was so underweight that he didn't register. It was very sad. He looked like a concentration camp survivor. He still struggles with foods and stomach problems at 19, but he is a fairly normal weight now. I tried really hard to not make a big deal out of food or eating because I didn't want to create an eating disorder or a struggle for control. From very early on, I would let him fix his own peanut butter sandwich if he didn't like what I was fixing. I think he lived off of cheerios and peanut butter for most of his life. There is a little more variety now, not much, but a little.

    Impulsivity was a HUGE issue for us too. He spent many years on stimulants which didn't help the eating and weight gain. I'm not sure if I would still go that route if I had it to do all over again. He says that he thinks it was a mistake and the stimulants made him anxious and paranoid. But his impulsivity was dangerous, so who knows what I really should have done. We all just do our best and hope for the best, right?

    From what I have seen Risperidol is a pretty serious drug. I've had a number of students take it. Those on it became overweight, sluggish and unmotivated. I think it's side effects might outweigh it's benefits unless you have a really violent child, but I'm not a doctor. It's just my 2 cents FWIW.

    Relax and be good to yourself. I can tell how hard you are trying to be a good dad. I'm sure your girls know it too.

    ReplyDelete
    Replies
    1. Yeah, the Risperdal thing seems to be the consensus. BIG drug. She's just a little girl.

      Delete
  16. I have also had MANY doctor issues with doctors not listening. I think, basically, with busy doctors--especially if this guy is THE autism doctor--sometimes you have to really make them pay attention. They should just *know* that they really ought to pay attention, but until we get robot doctors, we have to deal with that pesky human nature crap.

    Have you tried getting Lily to drink calories? I don't know how she is with beverages vs. food . . . but stuff like fresh fruit juice or smoothies or whatnot? You can pack quite a lot of calories into a beverage, enough to make it a meal.. and it's easy enough to change up flavors if she won't take a certain kind of food after awhile. (I'm sure this is something you've tried but just in CASE, I figured it wouldn't hurt to throw it out there.) I know for me, a lot of my eating weirdness comes from texture. I hate the way some foods feel in my mouth, and love the way others do.

    ReplyDelete
    Replies
    1. Another thought I had while I was reading--when you said that he said it was the consensus among autism doctors. Lily isn't "autism," she's Lily and she's unique in her own challenges. Every kid that has autism has their own needs, along with every kid in general, so I bristled a bit when I read that. I personally feel like it's a less helpful approach by doctors to try to treat "autism" generally when it manifests itself so differently among people on the spectrum.

      Delete
    2. We actually went for a high calorie weight gain kind of drink once upon a time. . . i can't remember the name of it, but it has a chocolate milk kinda flavor to it. She really didn't take to it, but it's been a while. It's worth revisiting.

      Lily's eating does not appear to be texture specific. Her preferences cover all colors, consistencies and textures. . . without understandable reason.

      I agree with your thoughts on "consensus".

      Delete
    3. bacon. tasty, tasty bacon. or maybe extreme bacon pancakes:

      http://www.wired.com/geekdad/2010/08/the-great-bacon-odyssey-extreme-bacon-pancakes/


      (lots of good comments and healthy ranting already, all i have to add is silliness)

      Delete
  17. I can't help myself. DUMP this guy. Don't outright dump him. Get Lily's records. Start making appointments with new docs, like you are interviewing a potential employee - because that is what you are doing. You are interviewing for the privilege of being part of Lily's team - and Lily's life and that is the most important position you would ever fill. If you were paying this guy's salary (and no matter the insurance or the co-pay - really you are) you would not let him get away with you feeling that you don't know if he's lumped Lily in with all the other kids he sees. We have THE best doctor - I swear it - in Dr. Chez who has a 19 year old stepdaughter who is on the more severe end of the spectrum herself. He is awesome, has never kept me waiting, never BS'ed me with his credentials (cuz if they're that good, they don't have to) and he pushes conventional meds to the limits to get maximum beneficial results. You CAN find someone like this but you have to look HARD and long. Or come visit us here in Northern CA!!! Sorry for the rant!! All done...

    ReplyDelete
    Replies
    1. bah! Don't be reactionary! It's too early to panic, Karen. And I KNOW you love Dr. Chez. I've got his book. . . per your recommendation. :)

      Delete
  18. Man, it would burn me up to see such a late sign-in, too.

    ReplyDelete
    Replies
    1. Doctors in general don't care enough about my time.

      Delete
  19. Wow, the last time I weighed 34 lbs. was birth. I was a heavy baby. I hope you can find some type of high calorie drink or some type of food she likes. When I had foster children and was constantly back and forth with different doctors, it wore me out. Hope things look up for you in that area!

    ReplyDelete
    Replies
    1. you were a big baby. I'm sorry about your mother (who i assume did not live through birth). We're good. Doctor schlepping is getting pretty routine. . .

      Delete
  20. It is hard to divide yourself in two to be there for each child. All you can do is your best, but sometimes it doesn't seem to be enough. I am sorry that your family is going through this.

    All I can say about doctors is that sometimes you have to tell them that they are being jackasses. I have even yelled at my doctor on occasion when he was trying to hurry me out the door.

    ReplyDelete
    Replies
    1. Next visit. . . we'll see how he does. I have it all mapped out.

      Delete
  21. My heart aches for you guys! What a tough situation. Sadly the doctor probably means well but for whatever reason isn't at the top of his game.

    When I was Lilly's age (and even now to some extent) my food preferences were cyclic. My favorite food one day would be inedible the next. I wish I could tell you there's a method to the madness!

    ReplyDelete
    Replies
    1. Yeah, hers are cyclic too. Her cycles just last a long time. . . nuggets for a year. . . then no nuggets for a year, etc. Actually the current nugget cycle is going on about 2 years. *Crosses fingers that it never ends*

      Delete
  22. I am new to your blog. But not to similar experiences to what you relate. It is frustrating when the doctor's listen, but don't actually hear what is going on. Or that they get so many kids in their care that the parent gets the feeling that all of the kids are merging into one.

    We have two boys on the Autism spectrum. the youngest has facets of autism and the one we struggle with caring for the most.

    I have some other comments, but wanted to introduce myself, before I go through the rest of your blog. I am always impressed when I find parents who actively blog about caring for kids such as ours.

    And the right doctor is the one that the child is comfortable with who also makes the parents feel like they are part of a team, and not the whole team all by themselves. I agree with Karen V. Finding the right doctor is like hiring an employee. You will know within a couple of visits if you found the right one or not.

    Our youngest clicked with his current doctor in a way I have never seen him do. Plus, I can call her anytime and she will call me back within 15 minutes if she isn't with a patient. We are never kept waiting, and she concerns herself with the whole family, not just our youngest, or the other two boys on the spectrum. We have five kids, 3 dogs and a cat. So it is important that all factors in the child's life be considered.

    But I am preaching to the choir and you don't need that.

    ReplyDelete
    Replies
    1. Welcome, Carl! I'm reminded of the fish from "Finding Nemo" after Nemo swims through the ring of fire. (is that right? I need to watch that again)

      "Welcome Brother Sharkbait"
      "Sharkbait, Ohh hah hah"

      I linked back to your blog. Nicely done, sir, nicely done.

      Meh. . . preach on. I like a new voice.

      Delete