update on tristan monkey head
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update on tristan monkey head
| Wed, 12-08-2004 - 7:29pm |
ok, here's an update for all you dear ladies who gave me hugs and support when i needed it:)
we had tristan's evaluation with an early intervention program last week, and they decided to extend services to us. that gives us access to almost all of the specialists and therapists that we need at this time, which is beyond awesome. we still have a lot more questions than we have answers, but we're starting to eliminate things one by one. so far we've identified some sensory problems and are leaning towards an anxiety disorder and perhaps a mood disorder. it's very difficult diagnosing something like that in a toddler but tristan's behavior is so far from the norm it's clear that something is wrong, so we're doing our best to figure out what it is. he's not really doing any better but i certainly feel better now that we're getting involved with some people who know what they're doing. we have a psych eval scheduled for wed the 15th, so if you all will keep us in your thoughts and prayers i would greatly appreciate it!
we had tristan's evaluation with an early intervention program last week, and they decided to extend services to us. that gives us access to almost all of the specialists and therapists that we need at this time, which is beyond awesome. we still have a lot more questions than we have answers, but we're starting to eliminate things one by one. so far we've identified some sensory problems and are leaning towards an anxiety disorder and perhaps a mood disorder. it's very difficult diagnosing something like that in a toddler but tristan's behavior is so far from the norm it's clear that something is wrong, so we're doing our best to figure out what it is. he's not really doing any better but i certainly feel better now that we're getting involved with some people who know what they're doing. we have a psych eval scheduled for wed the 15th, so if you all will keep us in your thoughts and prayers i would greatly appreciate it!


You have been in my thoughts since your last post. I'm sorry that Tristan isn't doing better, but hopefully that is on the horizon. It must be a great relief to finally have some professionals taking you seriously. The momma bear road is tough when it runs through a medical maze. Hard to feel empowered and to have (no pun intended) clarity. Glad you (hopefully) finally have some reinforcements on the line. You seem like a very cool person. And your kids are beautiful. Best of luck to you. You know the women here are watching for your posts and thinking of you. Wish there was more that we could do.
Cheers.
D.
i'm worn and ragged right now but trying to stay in good spirits, as bad just gets worse when mommy isn't smiling. i sat down and had myself a good cry last night and then again this morning, but i think i've pulled it together now.
he's such a precious little boy with such a spark behind the storm that's always around him, but sometimes i really wonder if i can do this. he's so bright and has such a little personality, i just wish i saw more of that than the scary exorcist boy i get so much of the time. monday and tuesday of this week were pure hell and we were all completely miserable, but today he had some of his shining moments and i remembered that i really do love him, lol. he was 'helping' me make dinner tonight and he sidled up next to me and kinda leaned into me and then didn't pull away when i hugged him. i blew in his ear and kinda snuffled his neck and he just busted up laughing and threw his arms around me, and all the frustration of the last week just melted away.
last night i had a bad scare with him, and that helped me get some perspective too. i stepped on a tiny sliver of glass in the kitchen (don't you love how you can sweep and sweep after a glass shatters and then STILL get glass in your foot 2 weeks later??) and he freaked out BAD, tristan is terrified of blood and for some reason he's really quirky about feet as well, so blood on a foot is like his worst nightmare, lol. he was convinced he had glass in HIS foot too, and since he had been in the kitchen with me i was afraid he did too. so i started trying to see if he had glass in HIS foot and he just lost it and screamed so hard he passed out. he had been eating a cracker before it all started and when he passed out i layed him on his side and fished the cracker out so he wouldn't choke. well he came to while i had my finger in his mouth and gagged and puked all over me, then promptly passed out again. we were all covered in puke and he still had some in his mouth, and i was so afraid he was going to aspirate some of the vomit and die. i wiped his mouth out the best i could with my shirt he came back around, but then he was acting so strange, all tired and lethargic and generally out of it, and i was convinced he had brain damage or something. ran him to the dr and of course he was fine, but it was a very scary moment. it reminded me that no matter how aweful he can be sometimes he's still my baby and i couldn't live without him.
we probably have a long way to go with the evaluations and even then there's no guarantee, but at least it's a start. plus this early intervention program offers respite care, and at this point that sounds really freaking good to me, lol!
thanks for the encouragement
I hope things are back to normal soon :)
I am so glad to here some good news come your way :) Hopefully they will tell you it is something like a silly allergy that is causing this...something simple to make him well! I am so glad you stuck to your guns and got him help. More Dr's need to listen when a mom says something about her child.
Best of wishes to Tristan and your family.
Traci
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Okay, well I hear you, but I wasn't talking about your dinner napkin folding skills or the jammies ... it's not like anyone here would hold that against you anyway since I think a lot of us have been there ... I just meant it seems like you have great spirit.
<> Some people will have you believing that you are a drooling boob if you listen to them and let them convince you to second-guess yourself. Sticking to the guns takes practice and hard-earned confidence.
<> Damn.
<> That's the truth.
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I hope that they can help him. He's like the boy that fell down the rabbit hole. You should write a children's book later when your perspective is more complete. Not to mention a book for parents. Have you ever read Operating Instructions by Anne Lamott? Or anything by Ariel Gore ... The Mother Trip, Breeder, or Atlas of the Human Heart (haven't read that one yet myself)? Gore has a website too ... hipmomma.com or hipmamma.com. I think they have message boards there. Those authors are in touch with the black humor side of motherhood. There are others .... I just mention it because reading is a good release. If you can find the time. Just a thought. If you want to get completely away from the parenting thing ... David Sedaris is pretty funny ... as in, don't read it in public because people will look at you funny when you laugh out loud and coffee comes out your nose. You could use some laughs. (Not that you asked me for my opinion. LOL.) Into Thin Air by Jon Krakauer. Read it? It's by an outdoor writer who climbed Everest during a season when things didn't go so well. I don't know why, but I also felt like adding that one. It's a page turner to give your mind a break. And it's about survival.
<> I hope you give yourself credit and cut yourself as much slack as you can. That's some serious challenge you have there. How do you cope? Do you have good support? I know you said that you don't make friends easily ... neither do I ... and I have had to move around a bit, so I go long stretches without a "tribe." Everything is easier when you have good people at your back. If you don't have that ... then I send you my best vibes and my respect. Because that makes a hard road harder. You get used to it, and you forget that you are at higher altitude of stress than everyone else. And it's easy to be too hard on yourself. Your circumstances are beating on you ... so try not to beat on yourself. (Again, not that you asked me for my two cents. LOL!)
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Well, I don't have the same degree of challenge that you have ... but I will tell you about my week to distract you. LOL. Sofia had a fever of 105 Tuesday night. Scared the #$@%^ out of me. Especially because she had no other symptoms. I was imagining all kinds of bad things. When the fever spiked, I tried to give her some Motrin and she gagged herself into throwing it up. There I was, frantically tossing books out of her book bin (a bright yellow beverage/ice bucket from Target) so she could vomit somewhere besides her bed at 12:30AM. The fever eventually went away the next day. By late afternoon, her temp was normal. But she was not. I gave her a bath and washed her hair. She cried the whole time I was blow drying her. And she kept saying, "I feel bad. I feel really bad. I don't want to be sick." I figured she was tired ... but the dr's office warned me that morning to watch for strange behavior and lethargy. They set me up to think the worst. (Normally, I'd just be like ... okay drama girl, let's have a nap.) I dressed her in warm, clean clothes and walked her down stairs. I put her favorite PBS show on and brought her a drink and settled her on the sofa. All was quiet. Her brother fell asleep on the chair nearby. Then from the kitchen I hear a THUMP. And I walk into the TV room and she's on the floor, crying and saying things like, "NO! I don't want to play with them! NO!" DD was acting looney. She quieted down for a while and I tip-toed up to her and asked her if she wanted a snack ... maybe some lunchmeat ... and she started crying hysterically ... ???!! WTF? So now I'm sure she has brain fever or something. Of course. I knew it !! DH was off the radar ... not reachable by phone and I had no clue when he would re-surface. In the middle of this my mom, the (paranoid) former nurse calls. I'm running around pulling a sweater on and checking myself in the mirror (gag ... I got the kids bathed and presentable but never got as far as my own shower) and I'm thinking I've got to run to the urgent care (it's now 5:30PM). And my mother is ranting in my ear about my dh not being available and how my pediatrician must be an irresponsible quack for not freaking out the night before when I called about the 105 fever. In other words, the thought of a high fever in her grandchild scares the crap out of her, so never mind that my pediatrician's 28 years of experience tell him that it's fruitless to freak out about asymptomatic high fevers in the first few days ... and that the child's behavior is more indicative of their condition than the number on the thermometer ... let's drag the sick kid out on a cold night and run all kinds of tests prematurely to treat gramma's anxiety, the true emergency. I'm thinking ... how bout you take a xanax and I'll pretend we went to the urgent care? Meanwhile, as my mom is freaking out on the phone, dd suddenly perks up. She's laughing and talking calmly with me ... and I'm starting to realize she was probably just incoherent from being tired from two nights of fragmented sleep and the fever. We are terrible about waking up. She had terrible night terrors for a while last year ... and during those episodes, you'd swear there was something medically wrong with her. I think we just sleep like the dead and have trouble (resurrecting) waking up ... and being sleep deprived messes with our "user interface." I had one of those mom-connect-the-dots-light-bulb-moments (which was really nice, because I usually don't have those until I am already in the Dr's waiting room -- you know, you're convinced they're dying and then you realize it's not a rash, it's magic marker and I realize -- too late --that the dr is about to charge me $15 to tell me that I am an idiot SAHM with who needs another hobby besides panicking about my kids) ... I just knew dd was okay. And it was becoming clearer by the minute. But my mother is still raving in my ear about her forty years of experience ... so that my two choices were ... 1. do what she wanted and yank the kid to urgent care where some tired doctor is going to address my non-emergency (thank God) just so I can tell mom the dr (that she doesn't trust) says dd is fine or ... 2. I can disrespect her "forty years" of nursing experience and have a little early evening opera. Picture Viking helmuts and loud women with large mouths releasing emphatic, glass-shaking, prolonged sounds into the air and wagging their spears. Wagner meets daytime tv.
I chose Wagner. But I think I managed to keep it to a low rumble. She lectured me about not putting my concern about what doctors think of me ahead of my dd's well-being (giving away her utter underestimation of me -- elephants and hairy-eye-balls would not deter me if I thought there was a chance something might really be wrong with dd). That it is my maternal duty to freak out and withstand the withering judgement of sane professionals to have reassurance that all is medically well with dd. ... And I reminded her that I was looking at the child with my own eyes and that she shouldn't second guess me from seven hours away. Quite boring as these things can go, actually.
<> Again, best of luck to you. Respite care sounds like a terrific idea ... sounds like they are at least somewhat clued in to the needs of the family and it's part in the health of the patient. Best of luck to you and your family, Clarity . Check in here anytime. Keep posting. Email if you like.
Cheers,
D.