Jan 31 2008
Brilly-pants puts on her whiney-pants
Hi. It’s me. Remember me? That girl who used to blog every day? That girl whose blog people used to read? That girl who used to read other people’s blogs? Ahhh, you’re beginning to remember.
I have a confession: I’ve been hiding from you. Yes, you. And you. And you. I’ve signed out of IM, I haven’t touched my email (even in a few cases where I was in the middle of a “conversation” with people, who were never offered an explanation for my dropping off the face of the earth), I haven’t visited cre8buzz, I hadn’t even deleted my thousand or so spam comments on my blog until just a few minutes ago. (Thanks, spammers, by the way. I wouldn’t have had any new comments without you…)
You’re not the enemy, of course. I know that. My hiding out is more of a coping mechanism for the insanity that my life has become over the last few weeks. There’s no end in site—in fact, if anything, the insanity is just about to get more insane.
When I signed on to my computer today, I had a handful of emails from you guys, asking me specifically how my little boy is doing. Thank you so much for your concern. I was avoiding talking about it, because I didn’t want every post to be about my sickly child. But hey, you asked. So here goes. Let the dump-session commence…
Today is the first day in over a week that I’m not rushing Fuzzles to the doctor, the hospital, or therapy of some kind. He’s been tested for everything under the sun— allergies, thyroid disorders, celiac disease, and even cystic fibrosis. That’s a lot of needles, a lot of labs, a lot of negative results. Don’t get me wrong—I’m glad the results are negative. But it doesn’t answer the questions. My son is perpetually sick. He hasn’t gained weight in nearly six months. He is “failing to thrive.” And no one has any idea why.
Finally we were referred to the gastro-intestinal department at Primary Children’s Hospital in Salt Lake City, but when I called to schedule an appointment, I learned that they won’t be able to squeeze him in until May.
Um… hi. May? Isn’t that a little far away? And that would be when they would begin their evaluations, not when they would actually have figured something out. Despite my impassioned pleas and explanations that my baby needs help right now, they wouldn’t budge.
Do you hear that sound? That’s me… pulling my hair out. By the fistfuls.
Did I also mention that Fuzzles has strep? But not in his throat, because that would be far too mundane for my little guy. No, he has strep on his BUM. Yup. This is excrutiating on his sensitive little hiney. Poor kid. Just one more thing to deal with.
Of course, none of this scratches the surface of his biggest problems, which are mental. The results of an evaluation of his mental development came in this week. It was shocking. I guess maybe I go into denial in between doctor’s appointments or something, because I start to convince myself that he’s really not all that behind. This evaluation says differently, and as I read through it, I could only agree with it. It shows that he ranks “very low” and that he falls into the 1st percentile (50th, of course, being “average”). In some areas of mental development, he is functioning at a three month old level.
My 17 month old son is the size of a nine month old and is mentally functioning as a three month old. And no one has any idea why, and no one has any answers for us.
But, fortunately, there is therapy, which we began yesterday. It’s a bit overwhelming, really, and it’s going to be a lot of work, diligence, and time. And that’s okay. I’m willing to do it, and I’m grateful for those who are trained and willing to help us.
He also has a screening set up at Primary Children’s Hospital for autism which is, of course, what everyone thinks (whether or not they say it) is going on here (though it clearly doesn’t explain a lot of his physical ailments). Unfortunately, he’s not eligible for this screening until he’s walking on his own. And, um, part of his developmental issues include lack of motor skills— meaning that one of his symptoms is that he can’t walk. And yet he has to be able to walk in order to take a test that will help to explain why he can’t walk.
Um…
In the meantime, my baby is the most gorgeous creature that ever lived. He is so happy and smiley and sweet. Whatever else he may be lacking, his sense of humor is perfectly in tact. His gigantic blue eyes will melt your heart, and his mad-scientist hair will make you giggle.
I want to make it clear that I am so grateful for this little person in my life. This is probably the most difficult thing I’ve ever been through in my life, but only because I hate that his life has to be so difficult. But Fuzzles is special, he is perfect. And I’m the luckiest mama in the world to have him as my own. And I will do anything in my power, limited as it is, to make his life the very best it can be.
There’s more here, more that I haven’t figured out how to put into words yet. Things that are completely illogical and irrational. Things about guilt, faith, love, hurt. My nerves are raw and my mind is spinning all the time. My older children have to make sacrifices too in all of this, and while they actually seem okay with that, I hate the unfairness of it. It makes me feel incredibly guilty, as though I were picking Fuzzles as my “favorite” and the other three just have to fend for themselves, because they only have what’s left of their mother after Fuzzles gets the lion’s share. That’s not the truth, of course, and again, it’s totally irrational, but it doesn’t matter. I know this isn’t making any sense, which is why I wasn’t going to talk about it and why I’m now going to stop talking about it until I’ve begun to unravel it in my own mind…
So there it is. My update. Thanks for letting me dump it all out. Maybe now I can come out of hiding. As soon as I catch my breath…
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Everything you wrote makes perfect sense, at least to any other parent that reads it.
I have been thinking often of you and wondering what is going on.
Don’t underestimate the power you have as his mother - and don’t let any medical personnel railroad you, or hold you back.
You will find partners in this process who will be heavily invested with you in getting answers - I pray you find them quickly - and I will continue to pray for strength for you, and for Fuzzles.
You know I think both you and Fuzzles are amazing and coping with all of this gloriously. You’re my hero and I love you forever.
I was just thinking about you the other day wondering where you were. I’m sorry you’ve been going through this. We actually ‘get’ to spend a large portion of tomorrow at primary children’s doing testing with my 4 year old. We’ve been waiting since November. Sigh. But you are your child’s best advocate. It’s okay if he get’s the lion’s share right now. Not everything has to be perfectly fair at all times, that’s just not how life is. There will be other moments, other times when your other children will need you most and they’ll get it. Hang in there. Let me know what you need (even if it’s a night out at Applebee’s.)
wow - it is horrible of me to say that I have my own trials to deal with and not yours? Hang in there, and hide out as long as you need to. We will all be here waiting anxiously for updates and more delightful brillig posts whenever you are ready to post them. You and Fuzzles are on my “prayer list…”
This isn’t whining. This is sharing.
Our family prays for yours daily. Every thought and feeling you’ve shared here seems…well…just right somehow. I nodded along as I read thinking, yeah…that’s how I’d feel too…
Your love for your family is inspiring to me. The way you’re hurting right now makes those who love you want to reach out and fix things for you somehow…but we can’t.
Neil says I get a trip to Utah when I hit my goal weight. Tonight I’m going to work out for the first time in…mmm…over a year. And I’m going to do it so I can see you all the sooner. ~hugs~
All I can say is that you and your family are in my heart and in my prayers. I hope that help is found for Fuzzles soon and that the mystery is solved and easily fixed.
Oh, my Brilly-Poo. (pshaw! I can’t use “brilly-pants,” you just used it! Although I do like Brilly-Pie. That has a nice ring to it.)
First of all, I grew up (okay, he came along when I was 12) with a brother who has Fetal Alcohol Syndrome and Cerebral Palsy and I never felt like he was getting the “best” of my mom. Even at times when it seemed like he was getting all the attention, I never once doubted how much my mom loved me. And I’m SURE your babes know how much you love them.
This is just a phase. Albeit, a scary and hard one - but it will pass. Eventually you will have the answers you are looking for. Until then, we’re all here to listen. Your family is there absorbing and sharing your love.
Don’t apologize for your feelings and thoughts. They are yours and they are what makes us all love you so much.
(((((BIIIIIIIIIIIIIIIIIIIIIIG Hugs, honey)))))
I’m sorry Brill. I wish I had answers for you and that you didn’t have to wait so long to get your sweetie seen by someone who might be able to help him.
I never know what to say because I’m sure that nothing will make it better. But I think of you often, wish you the best, and pray that you hang in there!
MAY?!?! What the frickin’ brackin’ heck?
Dearest, dearest. All six of you are in my prayers constantly. I sure wish that would fix everything.
Ne stress pas about anything here on Planet Blog. Our love for you is unconditional, and we want nothing but the best for you.
(And it’ s not like we’re going anywhere, anyway.)
Hmm. I echo Kim. Everything you said makes sense. And I’ll be the first to say that waiting for answers sucks. Royally.
My prayers are with you and your family.
I had a sister with epilepsy and I don’t remember feeling like the one left out. But I can understand someone feeling that way.
I’d love to be able to say something to take the pain away, but I know nothing I’m going to say is going to do that. I just hope that knowing that I’m praying for you and a lot of other people are praying for you will help ease the burden a little.
Oh Brills. I hear your Momma love for Fuzzles. You are struggling well and fighting for your sweet boy!!
Praying you through!!! Love and hugs to you!!
I was wondering about how things were going for you all a few mornings ago - so thank you for the update - it’s not whining, it’s letting people who care about you know what is going on.
I can only imagine the heartache you must be feeling to have to wait for answers - I am keeping you (and your entire family) in my thoughts and prayers, and I hope that you are able to get some answers sooner rather than later.
Sending love, and hugs and snuggles for every last baby of yours, and you and your hubby too -
Aw, Brilly, thank you for the update. Hang in there–the Brillig family is in my prayers!
That’s not whining at all. (((hugs))) I can’t believe they want to wait until MAY to see him for an evaluation. *sigh*
Never apologize for your feelings. I’m always here to listen. Take care. I hope you get answers soon.
And your kids ALL know you love them.
You’re lucky to have Fuzzles and he’s lucky to have you.
I have missed and worried about you. Thank you for the update. You are so brave to offer us all of this. If I could ever be of support to you, please do not hesitate to ask. You are a delight & a gift to those who know you. ~Hugs~ EE
That you for revealing your heart to us once again. May I just say how lucky Fuzzles is to have you for his mommy. You are an amazing gal and everything you have said makes sense to me.
It’s so frustrating that we have to hurry up and wait in the medical community so much. Don’t they get how scary this is for you.
You and your family will be in my prayers and I wish you the very best and as much peace as our Heavenly Father has to give.
Ooooh too much worry…I am so sorry.
All I can say is go with your gut. He is your boy. You know him best and he has a wonderful mom and he sounds great.
Hang in there and fight for what you and he needs.
I’m so sorry! I hope they figure out what is going on with Fuzzles. Hang in there!
Brill,
(hugs) ditto the others re: this not being whining, but sharing.
I am praying for you.
I have a link to an autism awareness video up at my blog - it’s very moving, and talks about the waiting lists and utter ridiculousness of our “system” - but it’s also very emotional and I totally understand if you’re not ready for that.
HUGS and PRAYERS going out to you..
Heather
Whiney my rear end. This doesn’t qualify as whiney, it’s your life. I hope you get some answers soon and that the little guy starts gaining weight. That would be the scariest thing for me I think.
Best of luck to you and your son…have they done nay genetic testing as of yet?
Nothing I say can, I’m sure, make you feel better. Just know that you and your son are in my thoughts and prayers.
Ah, Brill, I love your whiney-pants. They are totally stylin’!
Seriously, we should all be able to whine with such grace and eloquence.
You know I adore you. You know I am not the only one who does.
You know…
I was starting to feel sorry for myself because i have stay at work late tonight–a Friday!! But now I really don’t. I wish there was something I could do.
If life is a gym (as I sometimes think of it) and our challenges are the weights God hands us which we’re supposed to be lifting to get stronger, then clearly you’re like Arnold Schwarzeneggar (in the good old days) compared to me–Woody Allen. He’s giving me the wussy weights (though to a wuss they can feel heavy…), and you’re pumping some crazy iron, and doing it well by the look of it.
You are a good Mom…to ALL of your kids. Just because Fuzzles needs more right now doesn’t mean you aren’t going to be there to give each of your kids what they need when they need it.
Hang in there. Many people are praying for your family and pulling for Fuzzles.
I’m sorry that you have to go through this my dear. I struggle with many of the issues you spoke of daily, fortunately for us we have a diagnosis–I can only imagine how difficult it must be to not have a ‘medical’ reason for Fuzzles delays.
I’ll be thinking about you and yours. *hugs*
I know of few people who have the courage and strength that you do. It is terrible to read all of this. One can’t help but wish they had to power to wave a magic wand and make it all go away. From all of us a cre8Buzz, we wish you the best in this journey and will be thinking of you along the way. You will persevere, because it is what you do and it is who you are.
This post isn’t whiney at all, and it does make sense in the sense that it’s clear you’re trying to cope with something that makes no sense. I’ll be thinking of you and your family, and I wish you the best.
I wish that I had words of comfort, since a hug coming through the computer would be difficult. Can I just tell you that I’m praying for you and your angel? What you’re experiencing now is a test nobody would want, ever. But your words are a comfort and an inspiration to so many more of us going through our own tests. Thanks for strengthening me.
I hope May comes fast, or ask if there is a list to get on to replace cancellations or if they will let you call every day to ask about cancellations. I would feel the same about everything! The failure to thrive thing is what is freaking me out. It{s starting to sound like one day you may be an episode of Mystery Diagnosis! You continute in my thoughts and prayers…Hang in there.
Sounds like your little one has been through a lot of tests. My son has food allergies. Did any of the doctors talk about how you can have non IgE mediated food allergies? Which means they WON’T show up on any test. Often, FTT (failure to thrive) is something that drvies the docs into looking into this more. Some allergists doe regular allergy tests and when they come back negative they say “nope, not food allergies”, others realize the non IgE allergies are increasing among the population and consider it as a possible explanation. Another potential reason for FTT is Eosiniphilic disorders - eosiniphilic esophagitis and eosiniphilic gastroenteritis which can ONLY be diangosed by edoscopy and colonoscopy and lots of biopsies. However, the experts in this field are few, and the biopsy slides have to be read by the right experts for a proper diagnosis.
Treatment for the above conditions is often a special formula called Neocate, and it tastes (so I’ve heard) so awful that in order for children to consume enough they child often has to be tube fed for a long time, either as sole source of nutrition or as supplemental to what ever solids they are taking in. In many cases the children start growing.
CHOP (Children’s hospital of Philadelphia), & Cincinatti children’s hospital are the leading centers for EOS conditions I believe. National Jewish in Denver has an awsome approach where they admit child for a week or so and all the experts work together to solve the mystery.
I am active on a food allergy board where many people have children who are FTT and found answers at those hospitals after months and years of dealing with docs and referrals and tests that found nothing. Now their children are being treated and growing and thriving. In many cases, the developmental delays worked themselves out when the nutritional aspects were cured.
I tell you all that because the FTT rang a bell with me because I read about it often in the food allergy community, not to give you something else to worry about. I guess my point is, if no doctor mentioned the fact that food allergies COULD play a role even with negative allergy test results, please ask them about it. If you want more info, send me an email. I can point you to a website where you can read a bit more about this.
Whatever is going on, I hope you find answers soonest.
Here’s a hug for you and prayers for your family too. Glad we got a chance to meet yesterday and have a bit of fun and leave the worries at home- even if it was for just a bit.
I hope you know that there are SO many of us who genuinely care about you and Fuzzles. I’m not a frequent commenter (bad, bad lurker) but I think of you often and have been keeping your family in my prayers.
Love and hugs. I hope you get some real answers soon.
I am sitting here right now with tears streaming down my cheeks. I wish I could give you a big hug and tell you that it is all going to work out fine…I wish I had a magic wand to take all the worry and troubles away.
Everything you said makes perfect sense…and the “hiding” makes sense too.
Hang in there…hope you don’t mind if I continue to pray for y’all.
You are in my thoughts and prayers.
Family will always come first. I would worry about you if you weren’t “absent” in some form or another with all the other things that are going on in your life.
My boss, Holly whom I’m fairly close with, has been going through something similar. Her daughter was given the “failure to thrive”diagnosis and hit many of her milestones very late. At almost 4 she is talking very little, has difficulty relating to other children, short attention span amongst other things. Holly has had her in speech therapy and occupational therapy and just recently got her approved for depvelopmental preschool (the diagnosis at this time is Sensory Integration Disorder for which there is very little known at this point) . It’s a hard road for my boss…especially working full time. But she has an amazing little girl and Holly loves her with all her heart. That is what is most important.
I know you will always do right by your little boy and know that we are all here whether you blog or not. We still care for you and wish you all the best.
I can’t find an email linkydoo or I’d email you. I have friends whose child was similar at the same age. A friend sent me your entry on a fluke today… feel free to send an email and I can tell you their story.
I just read your post about your little boy, and I want to say something, but I’m not quite sure what.
I admire your attitude of fighting to help him in any way that you can!
I hope you are able to get a diagnosis so you at least know what to fight.
xoxo
I have only just found your blog and this post but in reading it, it was like reading my own words and my experiences that I am having with my daughter.
I hope that the doctors find something for your sone. We have just been down the gastro path and she came up with nothing. Which is great, except when you are looking for an answer and a way to treat and help your baby.
I will be keeping your little man in my thoughts
sorry to hear about this.
this can’t be easy.
Brillig,
i’m so sorry. there’s nothing i can say here but that you’re in my thoughts.
and i’m going to send a whole pile of reiki your way.
the very best of wishes,
h
So sorry to hear you are having such a tough time with your sweet little guy! I haven’t been around cre8buzz much lately either, and I had been meaning to stop by and see what you had been up to - then I saw your note over at Tiff’s place… I feel just awful that I didn’t realize you were going through such tough times earlier.
And goodness, do I know how you feel! My daughter would have been FTT if she hadn’t had a feeding tube. It took us two and a half years to bite, scratch and claw our way to a diagnosis for her. We finally discovered she had Cyclic Vomiting Syndrome (CVS). We have it mostly controlled now through strict dietary restrictions, but boy was it horrendous getting her to that point. And now my 22 month old is having problems. I just dread going through it again. I suspect he just has severe reflux, but I have been playing games with myself wanting to believe it will all just go away and he will be fine. I know from other things I’ve read that you have written that you are an amazing mom and that you love your children fiercely… just hang in there OK? And if you feel like venting somewhere to someone who ‘gets it’, come on over. Lots of warm thoughts and prayers coming your way for you and your little guy!
Michelle @ In The Life Of A Child
Somehow there is nothing that hurts more than the suffering of our children. And though they are perfect in our eyes and in our hearts and we will accept them with all their flaws, we can’t help but mourn for the struggles they will have, the cruelties we know are out there in the world waiting for them, the barriers they will have to break through on their own or to accept they won’t be able to cross. And that’s why it is hard and it hurts and we stress and struggle. We want our babies to be perfect because we know the world they live in is not.
But the good news, my Darlin’, is that Fuzzles has you for a Mommy and no matter what you will not give up on him. Everything else may fall by the wayside, including your devoted fan club, but your kids will have you and all the love and energy that they can possibly need from you is theirs for the taking.
So I, for one, am content to be satisfied with your “leftovers”and if there is anything I can do to inspire or support you, I hope you will reach out. There are a number of us out here struggling with our own demons or those of our children, and sharing those troubles is not whinig, but connecting.
Hugs and comforting thoughts going your way by the bushel basket!