Here's the thing about stress

Disclaimer: I'm going to rant. I'm going to spill it right here. If you're going to be sensitive, claim I'm bashing anyone, boohoo at me or anything else.... don't bother. If you don't like it or don't wanna "hear" it, don't keep reading.



I have been hypothyroid (Hashimoto's) for years. Years. (That's important) I had bloodwork done in NYC and brought it down here to my new dr. He didn't like my TSH numbers saying they were to high and not in the newly recommended 1-2 range. So he increased my Synthroid. He said I should come back for my follow up 6-8 weeks so we can see how I was doing.

Today was that follow up. The day started out like any other. Me barely able to keep my eyes open because I hardly slept the night before. Kids demanding everything under the sun like little gaitling guns firing off their rounds.

The exceptions... instead of snoring, it was the "did I hear something or someone come in the door?" The sound of the heater turning on. The searing pain in my ears that felt like someone shoving a qtip in to hard. Meredith waking up because she'd had a bad dream. Sean waking up WAY to early because he had decided not to nap in favor of falling asleep to early.

I dropped the kids off at school and headed off to my dr's appointment. I waited & then did the triage. Dr walks in and we discuss my ears. They look good. Pain is probably coming from the brewing sinus infection causing congestion. Don't even get me started.

How am I feeling otherwise? "Well doc... my wrists hurt. Which I find odd. And I'm tired, but that's because I haven't been sleeping. And... I'm always cold. Always. I don't know if it's because my thyroid is acting up or if I was just kind of expecting it to be warmer down here compared to NYC."

He feels around.... "Your thyroid does feel full. We'll check all the thyroid hormone levels. Not just the TSH."

But...... lets talk about this fatigue. Oh yes.... Lets. Lets discuss it. PPPppppppppppllllllllllllleeeeeeeeeeeeaaaaaaaasssssssssssssssseeeeeeeeeeee.

He says there are two types of fatigue. Mental and physical. He thinks I told him I was tired in relation to the thyroid. And so to disprove that (or so I assume) he says, "Having a child with special needs is stressful. Very stressful. It's perfectly normal for a woman in your position to feel stressed."

Now here's the thing about having a child with special needs. IT"S NOT STRESSFUL!!!! Sean is a typical 2 year old.

Wanna know what's stressful? A son who can't seem to rid himself of a medication resistant bacteria  and doctors who proclaim that "this" antibiotic is going to finally do the trick. Except that their miracle cure has already been tried. They'd have known that if they had bothered to read the notes THEY wrote.

Stressful is spending every waking minute looking at, doing something for, arguing with or any of the other numerous things that can be placed here for my children and then having them end up in my bed that night with their feet touching me. It's not that I don't love my children and don't wanna comfort them. It's just that I'm tired of seeing them. Mommy needs a little down time too.

Stresful is knowing that there are 2 major holiday parties coming up in a few days and I'll probably be taking my kids alone. Stressful is knowing that my incredibly shy daughter will be stuck to my leg and grunting at people who try to say hi while my son tries to take off at full speed through the crowd.

Stressful is having a dog who was just treated at the vet for God knows what and thensome poop in your house on your freshly scrubbed floors and your son discovering it. Oh yeah fun times. Or a dog who hurts his damn foot the day before Thanksgiving. My dogs are high maintenance. Lets leave it at that.

Stresful is not having consistent help or any cooperation.

I could seriously go on & on. At the end of the day, I smile. I smile through it all because complaining to anyone is not worth it. It doesn't change anything. I watch my kids & devise new ways to try to outsmart them. HA! At the end of the day I find my silver lining.

So Doc goes on to say that we need to start looking into healthier eating. Yes.... healthier eating would be nice. I'm already eating healthier than I was. My new nickname is granola. Healthier eating also doesn't change the circumstances surrounding our lives.

We should also discuss exercise. Doc... I have a 2 year old & a 4 year old. I get more exercise in a day than you probably get in a year.

Maybe.... you need to talk to a therapist or clergy. Immerse yourself in religion or yoga.

Um... I know why I'm tired. I don't snore. I'm in relative good health. My husband snores. I'm a light sleeper. My husband hasn't been home at night. I am always sleeping with one ear cocked to the world to make sure we're safe.

My kids... barely make it through a night without waking up. My son... would sleep clear through 13 hours if his ears didn't hurt & his nose wasn't congested, but drs.... have so far been unable to help clear that up. And so we see dr after dr. Ya know why? Not because he has special needs.... but because we have relied on buttheaded drs to help us and all they've seen is a kid with down syndrome who "gets sick more than other kids because of it" AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHH

My 4 year old is afraid of the dark & says she has bad dreams. She in turn comes to wake me up.

Broken sleep = tired the next day. 1+1=2    It has nothing to do with special needs you dingbat! Wake a chick up at night and she'll be tired in the morning.

So yeah... I need to talk to someone. My travel agent. I need a few days by myself on the quiet shores of some deserted island where there is no one demanding anything, no schedules to be maintained, no dogs that stink the place up, etc. A sandy shore where I can just breathe. And maybe drool. But definitely breathe.

I told the dr that my mental fatigue has been there for a long time. That's nothing new. I have figured out ways to calm the mind for bed. And I always manage to get out of bed & keep going. Physical fatigue is a direct result of my not sleeping the last few weeks. Cure my kid and help the other one realize that the dark isn't so bad.... Then we've got the makings of a good night's sleep. Help the husband not snore? HA! Even better.

He finally agreed that my fatigue was just the result of broken sleep and said "I'm not ruling out biomedical causes..." There's no biomedical cause. I just need some unbroken sleep. "We'll have your results tomorrow." He made me feel like my thyroid issue was completely made up and that I haven't been dealing with it forever. He's the one who wanted me to come in for a follow up. He's the one who upped my synthroid because he didn't like my numbers. I didn't. I got my bloodwork from my old dr and went about my merry way.

Don't tell me my fatigue is because I have a child with special needs. The drs give me more stress than he ever will. Well... short of the broken computers he's been leaving around.

Where to begin....

We learned at Meredith's 4 year old well visit with the pediatrician that she hasn't grown any taller in the passed year. On average children grow 2-4 inches a year. When they don't, it raises some red flags. Meredith is now being followed by the endocrinologist. She's had a bone plate scan which has come back normal. Now we must figure out a way to get Lady M to have her blood taken.

We tried a couple weeks ago with the lab at CMC Huntersville, but.... well... lets just say it didn't go well. And not because of Meredith who was as perfect as any 4 year can & would be.

Meredith is also eating some veggies (be still my beating heart) and steak. Yes.... you read that right. Steak.

Sean on the other hand has grown an amazing 3-3.5 inches in the last 7 mos. And that's not including the latest unmeasured (as of yet) growth spurt he's had. He went from a cool 18-24 month pant size to a whopping 2T. He's also wearing 2t shirts. Except for his short arms (no gorillas here), he could easily wear a 3t shirt. CRAZY!!

Sean's TSH levels have been normal. Thank goodness.

The last few months have been hard on Sean though. He's had these awful recurrent ear infections & sinus infections. He's missed more play dates and such because of them.

He's now been on more antibiotics than I am comfy with and we've started a new probiotic. We've also upped the vitamin D and a couple other of his supplements in the hopes of helping his body fight the infection.

We also had some immunoglobulin (antibodies) blood tests done. They've shown that his IgG & IgM are both within normal limits, but to close for comfort to too low. SO we're going to the immunologist. His nuetrophils & tcells are both normal. So his immune system SHOULD be able to fight the infection. Especially with the antibiotics.

So why isn't his body fighting the infections? Why aren't the antibiotics working? Is it a resistant bacteria?

What we know right now is that Sean does have a penicillin resistant bacteria. It's not the end of the world, but at least we have somewhat of an answer as to why his symptoms keep coming back. I have my theories as to why it's happening in the first place.

We go back to Sean's regular ENT on December 3 (Monday) to see what our next step is. We know that antibiotics are not working. Even Suprax which is the preferred drug for this bacteria.

What else are my kids doing?

Well Meredith is reading sight words. She's able to sound out letters. You say cat and she immediately sounds out the "c" sound and says "c". She's writing her numbers & letters. She's really amazing.

Sean is talking & communicating so much!!! I can't believe how much he relates to his world in so many typical ways. I'll ask a question and he'll answer. He recognizes that he can't say certain things like "hungry". If we're not paying attention to his cues, he'll go over to his seat & pull it out.

He's potty training. Yes. My 2 year old boy is potty training. I never thought it would start at 2 because he's a boy. I really didn't think it would start at 2 because he has down syndrome. He recognizes when he's pooped and will come over & say "Ooooooooohhhhhh". Then the stench smacks you in the face.

He'll grab his diaper & look down when he's peeing. He's gone on the potty a couple of times, but I think he's afraid of it. He's a little to skinny to sit on it alone.

And if you ask really nicely I'll tell you our awesomely funny 1st time on the potty story.

Both kids are discovering that the other one is actually fun to have around. HA! They can actually play games now that Sean follows Lady M's directions. Did you see my eye roll there?

Sean started gymnastics this morning. Rob was able to take him and said he did really well. He needed minimal assistance and did really well until Mr. Frank tried to have him do a somersault.

We had Sean's transition to CMS (school system) meeting this morning. There were some good things, but there were also some things I wasn't so thrilled with. I have a few months before I have to really think about it. For now I'm going to live in ignorant bliss that my baby is going to be 3 years old.

School pictures

Can you believe that Sean is even old enough to have school pictures done? I can't. But they had them done last week. We got the proofs back. It's gonna be hard to pick, but pick we must.

   

I still can't over how well both my kids are doing in school. Meredith is adding & subtracting. She's really catching on to visual cues for solving math "problems". It's so fabulous to see. And Sean is saying more. He's really moving those lips & vocalizing coherent words. He to is really showing a great understanding of how things relate to each other. He can recognize several things we didn't think he'd know (yet). 

Going to school has done amazing things for both of them. All of the teachers Meredith has had the last couple of years have been wonderful. And I really can't say enough good things about their preschool. We have truly been blessed to find a school that is so good at teaching and nurturing my kids' minds.

And so the holiday season begins

You'll notice that it's another year of us trying to get a good picture with Santa. Sean had been doing well with the big guy holding him in passed years, but this year..... not so much. Meredith is again nowhere to be found. She again stayed just outside of the view of the camera playing with the faux snow. 




You can tell by this picture that Meredith has either told Sean that Santa is just as bad as Freddy Krueger or has just told him we're Jewish. Either way it yielded a picture for the ages and shows just how similar my kids really are.

Gotta love it! Way to keep the magic alive kids.

Daily Adventures of the Scotty Rocks

How's that for a title to an update?

What have we been up to? Not much actually. The kids are silly.

And doing well in school.

Walk for Wishes fundraiser. 

And Sean doing the Hokey Pokey.

Seriously.... there's one at every party

Meredith is doing so well at gymnastics. It's like she was born to be an olympian.

Made pilgrim hats at school.

Helping mommy put the couch together. Apparently he felt I was doing it wrong. By the way.... we got a new couch from IKEA. YAY!! The cover comes off so I can clean it. FABULOUS!

Check out those feet. They grew a whole shoe size recently. Holy growth spurt. 

All in all we've been pretty boring. I'll have a factual update soon. You know filled with stats & medical and therapeutic updates. We have a few. Sean & Meredith are doing phenomenal things :)

I know the pics aren't good quality, but I didn't have my camera. I need to start carrying it around again.