Monday morning, KayTar had her nutrition evaluation for the quarter. The nutritionist was mildly concerned that she hadn't gained an ounce in three months, but she said we could give it three more before starting Pediasure again. Today, we had a well-child check with the pediatrician and discovered she hasn't gained an ounce in 6 months. Although six months ago she was weighed in the minus clothes and today she was clothed, so she might have even lost just a tad. According to the pediatrician's measurements, she did gain a bit of height in the past six months (once they stop growing taller it becomes a real problem) but according to the nutritionist, she hasn't grown at all in three months. And so, either way, we begin Pediasure again. She will be going in for weight checks every two months for a while to keep a closer eye on things.
To make things more complicated, her eating has taken a hit recently. Yesterday it was only three stage 2 jars. 12 ounces of food, all day long. She's been making a habit of refusing all day, and finally accepting food around dinner. Some nights she will still take in her 5 jars for the day, but split between 4 evening hours. A few days ago, Josh called me from work and thought KayTar was having an episode because of the level of distress she was in when I answered his call. She wasn't having an episode. I had asked her if she wanted lunch. Only asked. I didn't pull out a jar of food and show it to her. I didn't make her sit in her eating spot. I didn't even have a spoon in my hand. I only mentioned it and she was in hysterics. I know she is two, and two year olds are nothing if not impetuous and predisposed to dramatic emotional outbursts, but methinks a simple "No." would have sufficed. Today, though, she has eaten two jars already, which is a relief. Two jars isn't much, only 8 ounces. But she took it and did so willingly, which is a nice change of pace.
I asked the pediatrician about switching from bottles to cups or straws, since KayTar is slowly becoming competent in drinking with them. She still struggles a good bit, but the skills are emerging. She said to leave things as they are. We all know KayTar is quite capable of going on strike from food and drink, and because she gains most of her calories through the bottle a switch could be detrimental, especially with her weight already a bit spotty. The "She will drink/eat when she is thirsty/hungry. She won't starve herself." line of thinking does not hold true with KayTar. She will indeed refuse to the point of weight loss and nutritional deficits.
She received four immunizations. We postponed her two year set in February, because she was ill at the time. Strep, I think it was. Today she finally received them. When we go back in two months for her weight check, she will also get her flu shot. The pediatrician doesn't want to risk her catching it this year, and neither do I. We already dance in that limbo between healthy and ill too often. With her nutrition and weight concerns, a little flu could seriously set us back. Or send us in for a little stay at Chez Hospital. We can live without that for a good while.
She's pooping well for a change. [poo talk, on a mommy blog, who would've thought] We were in a scary place a few weeks ago, involving the purchase of an child-sized enema. Thankfully with a few well-placed Miralax adjustments, we were able to work out the kinks and get things moving again without said-enema. When we go back in two months, we will also go in for GI x-rays, just to be sure things are really clearing out. The pediatrician said it takes a few months of good motility to clean out a clogged bowel. Hopefully, things will be nice and sparkly when we get it checked out.
We got the results from her spinal fluid tests. Normal. Everything is normal. Dr. H came in and said, "It's all normal, don't you hate that?" Because we DO hate it. We'd never wish for something to be wrong, but something IS wrong and we'd all like to know why. All these inconclusive tests are frustrating. There is a cause somewhere in her little body, we just can't seem to find it. Jury is still out on the EEG. I called the neurologist's secretary, but she said the report isn't in yet. So we wait.
In other news, the croup she had a few weeks ago never really went away, although it doesn't sound anything like croup anymore. She's been hacking and gagging at night for two weeks now, although her lungs sound clear. We've had quite a few late nights. We've discovered that the more tired she is when we tuck her in, the less coughing she does. The less coughing she does, the lower the odds are of her vomiting all over herself and her bed. KayTar seems to know this as well and is reluctant to go to sleep at anything resembling a normal bedtime. She's been up past midnight more than once this week. Things will go back to normal soon, we've done this enough times to know that for sure. A few late nights of partying with mom and dad don't do any long term bedtime damage, at least not in our house. Once she is feeling better, we'll go back to tucking her in at 9:30 and she will drift peacefully off to dreamland. But in the meantime my evening Me Time has taken a hit. She's been up until 12 and 1am, so I've been up until 1 and 2am to make up for it. I have to have a bit of concentrated adult time, even if I have to sacrifice sleep in order to get it. Life will return to normal soon enough, so we just have to wait it out and make due in the meantime. And waiting is what we do best, evidently.
PS: If you make it through this, you get a gold star. I didn't realize how long it was until I previewed it. Eeek.
Hi (just found your blog last week, don't know much Kaytar history yet),
Just wanted to say I feel your pain-across the board actually. I can relate to the feeding problems, the low weight, all of the stuff you mentioned. You sound like you have a really strong constitution and I just love your can do attitude. Kaytar's a lucky girl!
My guy has had some success with eating aversions through OT and we've seen some neat stuff through fish oil supplements.
Wish we could get together and chat someday, I don't know any moms in my real life with these issues to contend with that isolated feeling is actually as hard on me as all the unknowns themselves.
Keep up the great work, you're a smart and resourceful mom and Kaytar will be okay.
Well, if life can't be sparkling and clean, at least Kaytar's bowels can be ;)
I hate you have to go back to the Pedisure, really I do.
ah honey. it's a never ending roller coaster for you both (you four). am thinking of you and visualizing her packing on the ounces and pounds.
I will not say I know what you are going through, because Ben's sensory issues/picky eating issues are nothing compared to what you've got going over at your house, but I will agree that when doctors say, "Oh, he (she) will eat eventually; he (she) won't starve," they are wrong. At least as regards my child (and yours).
I'm so sorry that it's back to Pediasure. I hope that she'll need it for only a few weeks or months more.
Thankfully, our pediatrician has NEVER said that. She knows KayTar so well and looks out for her at every turn. I know most pediatricians would have tried forced her off the bottle already without thought, but our pediatrician is just amazing. She is always, always on KayTar's side. And I could not be more thankful for her. Through all this waiting and wondering, I know that she is being looked out for and it makes it easier to not really know.
I fear that the Pediasure might be around until she makes the transition to table foods, whenever that is. We thought her intake was high enough without it, but we were wrong. I just can't foresee her getting enough calories out of the baby food. She would have to be willing to eat at least roughly 4 more (mid-calorie) jars a day to equal one Pediasure. She only eats 5 per day, it would mean almost doubling her food intake. Ack. But as long as she is thriving, we're okay. Pediasure just signals teetering on the edge of not thriving, and that is a bummer.
Gold star, please. ;)
Have I ever told you that I have another close friend who is going through a similar thing with her son? Different issues altogether, but still an undiagnosed condition, meaning no prognosis, lots of confusion and frustration. I think of you every time I talk to her. I admire you both so much for the patience you have.
I can see your banner and I love it!
I am consistantly amazed by what you are able to manage, all the details you are able to call up on a moment's notice. One day this will all make sense for you. You are incredible.
I am sure the waiting is the hardest part.
I continue to be amazed by your strength, friend.
Hang in there.
I love that picture - those big beautiful eyes. How can you not want to move heaven and earth for her.
Oh the stress of this I cannot imagine. Though I do imagine I will be experiencing something similar.
Kyla you are doing such a fantastic job.
Kyla, I'm sorry if this is something you have already dealt with but I noticed your comment about how many jars of baby food kaytar would have to eat to get enough calories.
Has no one suggested enriching these to put extra calories in?
I ask because my daughter has all of her milk and formula "concentrated" to put more calories in less volume. This, like the pediasure, is just a means to an end. We need them to grow so they can continue to develop.
Yay, gold star for me! And I didn't even feel challenged.
You know I feel your pain on the sacrificing sleep for adult time thing, and I can't imagine piling all that other stuff on top. I hope you guys can get some answers soon.
Love the new banner, by the way.
Lisa: Today the pediatrician asked if we wanted to see a nutritionist (outside of our ECI nutritionist) to get ideas for higher calorie foods...but because KayTar takes the Pediasure without a problem, we decided isn't worth it. She would either be getting the additional calories from us adding to her food or from us giving Pediasure. It is the same either way. She is strange about textures and flavors, so adding to her food might be more off-putting than the Pediasure she readily accepts. Giving her the Pediasure isn't really a problem, it's just that we were so hoping that her non-supplemented eating and drinking would cut it. And it won't.
It was an excellent question. If we get to the point where we are giving her multiple Pediasures a day and still not seeing the growth we want, then we would venture into adding to her food as well, I suppose. I'm hoping a Pediasure or two per day will cut it though. Hoping. We'll be keeping a close eye on things, though, just in case.
Oh Kyla. I know some of this. But I won't pretend to understand your plight completely.
Ben's still eating 2 jars of babyfood for dinner each night too. And often there are tears on both our parts involved with that. Occasionally we can get him to nibble on other things during the day. Otherwise it's just babyfood all day. And milk. God bless milk. He's been orange from too many carrots for as long as I can remember. And he won't touch the pediasure. We have tried and tried, but haven't had any luck. And I tire so of hearing "Is that boy still on babyfood" or even worse "I am sure he would eventually!" I feel like yelling at them that I have three therapists and a pediatrician that say otherwise.
So in that area, I know your pain. The counting calories. The constant worrying when you hug them and feel every bone. The weighing. And it feels so overwhelming to me and I don't even have the rest of it to contend with. You are such a wonderful strong mommy to Kaytar and Bubtar, they are both lucky to have you.
Hugs to you my friend.
Oh, I just went and opened your blog with Explorer and I can see your banner now. It's so pretty.
Her eyes, her sweet eyes. Eat up, babygirl.
Oh, ho! I think I should get two gold stars for both reading (although not too too long) and for commenting. I always was a bit of a booty kisser though...so feel free to deny me both stars should you please.
Oh, how I hope Kaytar starts eating up a storm for you soon. And here's hoping that there are answers coming just round the bend. If only her cuteness could give us the answer(s), because lord knows she has that in excessive amounts.
Praying Kaytar starts packing on the pounds soon! Happy to hear the bowels are being cleared away!
it must be so hard to watch her refuse to eat and know that behind it all lies bigger issues and concerns. glad she grew a bit taller for you.
You are doing such a great job with her. You have the right attitude about it. Best of luck.
Sounds like you've had a tough time!! Hope the cough goes away completely!
It must be so frustrating, just not knowing. I don't live well with uncertainty, and I am always so impressed by people who manage to learn how to let go a little, as I suppose you have to at some point. it takes some strength, though, and you obviously have that, even if frustration still happens. A raise of the bottle in hopes of some weight gain! (for her, not me, please)
*shaking fist at test results* - come on now docs, figure out what is going on already! Though it does sound like they are doing the best they can. Kaytar is so strong for such a little lady. I'm sorry that it's back to the supplement, I'm frustrated for you. Hey, Kaytar must get all that strength from her super strong momma.
And I'm so glad I got a gold star today, I needed it (and I read it all without knowing about my reward).
I'm really bummed they didn't find anything wrong with KayTar because, like you said, there IS something wrong. But you can't fix it if you can't find it.
The frustration of it all must be immense.
But I'm glad she's eating a bit and you've got a flu shot lined up for her... last thing she needs is the flu this year!
Well I'm sure you know that when I say I think I understand and I definitely sympathise, that I truly mean it.
[are those the biggest eyes in the world?]
You really are doing a great job. You know that, don't you? Hang in there.
I hope you get an answer soon. But your fortitude is amazing. I can only imagine how frustrated and nervous you are, so I am in awe how well you are taking control and managing the challenges you face. Your daughter is blessed to have you as parents.
What a time you have been having. My heart and prayers are with you. It must be frustrating to see your baby suffering and no one can figure out why. I don't think I would be as strong and seemingly-lighthearted as you sound. It emphasizes that G*d really does give these special situations and children only to those who can handle it.
I have only been reading your blog for a short while, and I don't know much history of Kaytar yet, but I will be back! You are inspirational!
Hang in there.
I'm so sorry about the eating and weight gain challenges and concerns. That's so rough, (HUG). And the lack--still!!---of answers. I'm sorry about the why of it, but I'm not upset for you about the Pediasure... it was such a lifesaver for us.
Thanks for the update and my gosh, forget about length (it's not that long!)...I'll read any length to keep up.
Using My Words
I"m checking in to send hugs your way.
I so understand what you mean about hating the inconclusiveness of it all--but still, it's day-by-day, one step at a time.
Sounds like you have a lot to deal with.
My daughter had a lot of problems with feeding when she was young as well and still has problems with she has a cold. Too much mucous which causes her gag reflex to kick into overdrive.
Hang in there.
As for the bottle, I didn't wean Katie off her bottle until she was seven, and her teeth are fine. Not a single cavity, just some knocked out teeth but that's something completely different.
You're a GOOD mama.
The Baby is STILL on pediasure. STILL. We take her off, her weight plummets.
Gah. Well, she's getting taller, and that's good. And I'm going to keep my fingers crossed for sparkling bowels too. It's such a nice image to keep in mind ... ;-)
I'm sorry you're missing out on your me-time. That's important to get.
It's amazing how late we will stay up to get a little "me" time.
You are mothering your heart out though, aren't you? Sleep deprivation and all.
You know, Kyla, I just keep forgetting all this stuff. I come here and see the photos and, well there was that great period earlier in the summer, and I simply forget -- about the weight and the bottles and the stage 3 and the pediasure, and the gagging and the vomitting. And then I read one of these updates and my heart cracks for that beautiful little girl who just needs her calories.
This post made me weepy even though the bits with the test results were optimistic.
If your issues are a 10, mine with Zachary are a 2.4, so I don't want to pretend I completely get it. But, I want to say a few things:
1) We live in London in a neighborhood with a lot of French people. They let thier kids have bottles till long past age 3, and there seems no permanent harm. They seem to give it up before college.
2) People who tell you she won't starve herself are idiots. Let them try dealing with it for a day ans see what they think.
3) Zachary has a problem where he vomits very easily. Anything stuck in his throat triggers the gag relex. Our pediatrician said he'd outgrow it by 2.5 years. He has gotten better, but not completely. And, his milkaholism is part of the issue. WIthout solids to anchor the milk, we have trouble. He is also very negative about textures. I wonder if these little folks are simply responding to their gag reflex when they refuse solid food...?
What a beautiful pic of Kaytar.
I am so sorry yall have to go back on the pedisure. Hoping and praying K starts putting on the weight.
But I did have to laugh on your pooping comment on mommy blogs. Nothing like it :)
You gotta do what you gotta do to keep her healthy!
I so admire your courage and grace, and that picture in the last post just cracked me up. She is such a lttle ham. A very cute one!
When Kaytar gets her flu shot, please, please, please make sure it does not have Thimerosal in it. Ask the doctor and the nurse to show you the packaging, so you can read the label. (I just had to say that, just in case.)
Post a Comment