Thursday, August 19, 2010

I am - August

thankful for amazingly supportive family and friends
so proud of my family
getting a bigger belly everyday, and loving it
nervous about Tristan starting preschool
proud of our chemical free home
having a hard time with finances
wishing that it would get cooler....like yesterday
proud of my photography
feeling creative
overwhelmed with the idea of changing t's diet...AGAIN
still wishing on stars and hoping for miracles

Wednesday, August 18, 2010

This is our journey...we have to stay on track.

Everyday, it's a journey for us. We balance our life with Trinity and helping her to be the happy and well adjusted caring kiddo that she is. We strive to provide all the support and love that she needs and hope that she understands why her sibling dynamic is so different than her friends. We hope that she will always love him the way she does now, and that she will never resent this life or what we expect from her. We love our children. We hope that everything we do for them is seen and felt. I just know that one day, it will pay off...it pays off everyday, little by little...but the jackpot, the big one...I hope we hit it one day and Tristan loses his autism diagnosis completely.

Today...I am a little overwhelmed. We have had doctor's appointments up the wazoo, and now, we have MORE allergens for little t. Tristan has completed another round of allergy testing. We have a whole new list of things he can and can't eat...the bigger list is what he can't eat. He is now on a no Phenol diet...which is REALLY stinkin' hard. Anyone out there that is familiar with this diet, help me out please, cause I am overwhelmed. I stumbled across a great blog today, one of another mother who has and is traveling through this journey like we are. She posted a letter that I wanted to share. It touched me, to my core really, and I hope that you read it, if you are going through a similar situation, that you can absorb it, and move on to help your little one. We are trying, everyday, to find a way to help Tristan the best we can. I hope that we will find that one thing that does it for him, but I know it's not going to be that easy...until then, we will keep searching.

Thank you to all our friends who have offered help, to family who is understanding and accommodating...thank you to everyone who loves us, and our children for who they are. We think they are pretty great, and will only get greater with time.

An Open Letter
By Jon Gilbert

The other day that mom with the little boy who was making so much commotion in the fast food restaurant noticed you staring at her. He was a handful, wasn't he? His screaming was incessant

and the way he was challenging his mother: unacceptable. It's understandable that you would never allow your own child to holler at you like that, or bounce between the booths. You found yourself wondering what would possess her to bring an unruly child like that out into public in the first place. As your respectful children stood beside you in silence, you wondered when he would just be quiet. And you wondered what kind of mother she must be.

If you only knew what that mom wonders.

She wonders what she can do to get him to stop screaming. Sometimes it lasts all day, and lately, it's been almost every day. Then, while you put your kids back in the car, she wonders if he'll keep his seat belt on for the entire ride. You will get them home and they'll head right upstairs to play together nicely. She wonders if he'll decide it's time to begin switching the lights on and off repeatedly, or throw to everything that's on the desk onto to the floor.

When your kids fall down, you can ask them where it hurts and they can tell you. It hurts the other mom that all she can do is hold her little boy and wonder when he'll stop crying. Later, while you wonder what story you will read to your child tonight, the mom you know nothing about will once again cry herself to sleep in her husband's arms.

You wonder later why God would give any child to "that kind" of parent, yet she's thankful that God chose her. You judge the stranger based on that one incident, while she wonders why you didn't just ask if you could help. She probably wouldn't have taken it, but she would have appreciated the gesture.

Your four-year-old has mastered the art of conversation. She find's it triumphant that her son mumbles, "go school" and "want eat." You already wonder what your child's high school prom will be like. Meanwhile the other mom wonders when her four-year-old will potty train.

You wonder who your little one will marry some day, while the mom with the rambunctious son worries that he may not graduate from high school. You plan to send your child to the best university, and the lady that you
never met wonders if she'll have to care for hers as an adult.

While she's not jealous that your kids obey, talk and dream, she does wonder what it would be like to be able to call her son "normal." He is who he is. There's no altering that, and his mother wouldn't change him for the world. But feeling your eyes burn through her melts her soul. She does the best he can, and wonders why you judge them both.

She doesn't ask for your sympathy, just your understanding. Her family puts a lot of time and effort into helping him become the best somebody he can be. You don't see it, but that's all right, because his mom sees it every day. She sees the victories as well as the defeats.

You cast your judgment based on the one day you saw the unruly child in public. No one faults you for that, because the other mom used to do the same thing, back before her son's diagnosis. All the mom asks of you today is compassion and consideration.

Tonight, when you tuck your kids into bed, be thankful for the children you have and for who they are. Understand that, while you are getting butterfly kisses from your little angel, there are parents wondering when theirs will be able to say the words, "I love you."

Thursday, August 12, 2010

Kids can be so cruel...


Trinity and Tristan go to a little playgroup at the gym called "Kids Club". It's usually a good mix of kids, varying in ages and abilities. Backtracking a bit, Tristan had a food compromise (which means he ate something that he is allergic to, thus affecting him nuerologically/sensory and it just makes him act "wonky" as sister says). At any rate, he still went to play, and we asked that Trinity just help him a bit more than usual. I broke down at dinner last night...I found out some things that made me so sad...so much so that it stuck with me through-out last night, and into today, it will most likely stick with me forever.

Tristan was trying to play with some children, and Trinity said they were forming a circle around their toys and with arms spread out in front of them, saying things to Tristan like "NO, you can't play with us...you have germs!" when I asked T why they were saying that, she said it's because he sticks toys in his mouth. She said that they hide their food because he tries to eat it...and they call him names. What the hell? Where are the attendants? When did this become OK behavior? I didn't think that ganging up on a special needs child was something considered acceptable playground behavior. She said they continued to do things like this the whole time they were there. They used chairs as a barrier to keep him out, locking themselves under the table...that they were afraid of him. WHAT? My boy? I don't understand where this is coming from, and I am so saddened to think that these children have such a skewed reality of what and who Tristan really is. Trinity defended him, and said "He's a nice boy...he just is different." Why did she have to do this? Why didn't any adult step in?

This, my friends...this is my nightmare. I am fearful for my boy, for the judgement, the ridicule, the lasting affect that these words and actions can and will have on him. Shortly after the "attack" Tristan proceeded to destroy the room. I am sure he was lashing out of sadness, frustration...I can't say that I blame him. How else is a child that cannot talk supposed to have his words heard? He knocked down an entire bookshelf of toys. He even managed to escape from the room, and get all the way up two flights of stairs to run to the sanctuary of his dad. HOW DID HE GET OUT OF THE ROOM??? WHERE WERE THE ATTENDANTS? I am so fearful that this will be an ongoing problem...that children will continue to be mean, that adults will continue to get frustrated, that Tristan will continue to be ignored.

Monday, August 9, 2010

Happy 1st Day of 1st Grade!

It's amazing what a year can do...I remember when we sent Trinity off for her first day of Kinder...I was a wreck. She was a little ball of nerves, which quickly settled, but me...all day long trying to keep myself occupied, phone at my hip at all times, checking the clock and her schedule to see what she was doing at any given time. A wreck...a complete and utter mess. This year, totally different. We went through the usual motions, buying school supplies, picking out her outfit, packing her lunch, getting all her items ready for class. This year she will use "the big kids" restroom, whereas in Kinder, they had a private room...so, we had the potty talk "now, Trin, you know nobody needs to go in the potty room with you right?" We took a little family photo before walking her to school.
Everything was simple, no anxiety...relaxed. We took her to her class, she gave us both a quick kiss, then handed her bag to her teacher and sat down to get to work. So proud of her independence, her even temper, and her joy of learning. She has definitely come a long way from that little apprehensive Kindergartner that we once knew. Way to go Trinity...you have made it to 1st grade!!!!

Friday, July 23, 2010

Hello Belly...


...so nice of you to finally show up.



Bye Bye Pump...

...and the words from the great (or not so great) Donald Trump "You're Fired" *pretend to do the cobra hand thingy he does". I have officially, as of today, completely weaned off of my zofran pump *doing the happy dance*. I am sooo excited to be done with that damn thing, you have no idea. I was so sick of injecting myself EVERY DAY...my skin started to breakdown and I had to change the site every morning. I hated how I was woke up at odd hours in the night to refill a syringe, replace a battery or check on dosing. I disliked not being able to walk around without something on my shoulder, in my leg and always on my body. Now I am free. I have no cords holding me down. I don't have to be careful when pulling up my jeans for fear of ripping out my IV. I can have spontaneous love making with my husband and that is a wonderful thing. Today is a milestone, an achievement that I wasn't sure I would hit by now...but thanks to my nurses, I was able to slowly dose down, and here we are. No more pump...what a wonderful thing.

Wednesday, July 21, 2010

No one can see autism....

I found this on another website, had to post it here....very good description of how Autism functions and how it is viewed by the general public.

***How an Autistic Child Thinks:
Nobody can see my disability. I look just like every other kid-attractive, walking, making sound's. They can't see how my neurons are scrambled in my brain. They can't see the misconnections between the left and right brain. Nobody can see I have autism.
Nobody can see that my body is sick. No one can see that my stomach is in knots from my digestive system not working. No one can that my body and mind are starving because my cells don't make the right enzymes to digest food. No one see that I suffer from low blood sugar because I can't properly metabolize nourishment.
No one can see that my body is attacking its own nerve cells from auto-immune dysfunction. No one can see that mercury lead and arsenic cannot be excreted from my body, so it keeps building up in my brain. No one understands that my body cannot tolerate normal enjoyments for children, like bright, vivid colors and loud noises. I desperately want to be a kid and enjoy these things, but my body just won't let me.
But everyone can see how inappropriate my behavior can be when I am out in public. Everyone can see how immature I can be compared to other kids my age. Everyone sees the 2-year old tantrums when things have been too overwhelming for me. Everyone sees my frustration from trying to cope.
Everyone sees my screaming and fighting. Everyone just assumes I'm being bad, not that my body hurts, my eyes are in pain from colors, my ears ring with loud noises not heard by others.
Everyone sees my tantrums when I don't get my way. No one sees that I can't explain my fear when I think I'm not being understood. Everyone may see my screams when my mom takes something away from me. No one can see that having something of comfort can keep my fears under control for me, and taking it away makes my nerves explodes in anxiety.
No one understands how hard I have to work to keep my behaviors from reacting to the chemical imbalances in my body that makes me feel horrible. No one can see that, no matter how hard I try, sometimes I cannot control it. No one can see the shame I feel after I've had a meltdown from my body's problems.
What they don't see I am a person. I have feelings and want to be loved and accepted like everyone else. What they don't see is that, when they look at me like I need a good spanking; I understand that I'm not capable of controlling my body.
What they don't see is that I scream because I don't know how to say "HELP ME"
What they don't see is that I hear every ugly word they say, but for the life of me, I can't make my mouth say what I'm feeling. But they don't see that as a disability. They say I am unmanageable. They say I am a problem.
But I am not a problem. I HAVE AUTISM. My mom has taken me to more doctors and specialist than you can ever imagine. She's read more books and done more research on my disease than parents would ever want. She has tried special diet, supplements, drugs and various metabolic therapies. She has PRAYED for GUIDANCE and asked for discernment on how to help my body. And behaviors, OH YES, has she tried everything to help my behavior.
Stop telling her all I need is a spanking. If spanking would stop all this, my mom would gladly exchange my disability for a spanking. She knows better than all of you what I need to help me, and what we both need is your understanding, not ignorance.
I just want to be accepted and understood. No blamed and ashamed, I want to be appreciated for my gifts. I do have some if you look more closely. I want to be cared for as a person. I want you to care, even when I act like I don't.
I want to be respected, just like you do. I want you to respect my mom and dad for all the hard work they have done to help me try to lead a normal a life as possible. I want you to respect my family and all the struggles we have to endure because of our love for each other.
I want to be LOVED like any other child. And need you to role model respectful behavior for me so I can be respectful too. I want you to love me just like God would.

Monday, July 19, 2010

22 is a great number.

Soooo much yummy goodness in the number 22....it was the day that I was born, is the estimated due date of baby #3, is my lucky number and is where I am at in this pregnancy. 22 weeks already! It is really moving by fast. More good news...today, I dosed down for the 2nd time since starting the Zofran. This is a HUGE step towards weaning completely off the medication and having NO MORE PUMP!!! I get very excited at the idea of that. I have my midwife appointment on the 28th, and they will be doing another ultrasound to check weight/fluid/movement of baby. I am excited to get another sneek peek in there. I took some really nice belly pictures, but they were inadvertantly deleted from my memory card *EEK* so, hopefully this week, we can snap a few more. So far in this pregnancy I have realized a few things:

1-Pregnancies over 30 are much harder on your body then when you are a young gal
2-My ass thinks it's pregnant too
3-"The rules" of pregnancy kinda go out the window when you are chasing around 2 children..."don't lift anything heavier than 50 lbs...." yeah right.
4-People assume you are just fat, because the idea of you being pregnant again just seems crazy
5- Keeping track of how far along you are takes skill. I remember when I was pregnant with my first two, every week I updated a blog, I had a pregnancy ticker, I took pictures....now, when someone asks me how far along I am...I have to stop and count the weeks, so...I just say "5ish months".
6-My skinny jeans have officially kicked me out.
7-Decorating a nursery is a waste of time. In my experience, the baby sleeps in our room most of the time, so why bother, save money for more important things...like a good carseat.
8-I am so much more relaxed this time around. I have learned that pregnancy is to be enjoyed, and cherished, because honestly, we really don't know when it may or may not happen again. It's such a wonderful blessing, and I am thankful to be living it again.

Monday, July 5, 2010

Halfway there....

Time really has flown by. As of today, I am 20 weeks and halfway through this pregnancy. I can't believe that I will be a mama again in November. We are really excited about the new baby, and can't wait to learn more about her/him. I have another U/S scheduled the end of this month to monitor baby's weight gain, etc. I will share that with you when we have it. *I do have belly pictures, just need to upload them...when I have a chance, I will update that as well!*

Thursday, July 1, 2010

Midwife appointment today

We had our checkup today. The last appointment ran over, so we only got to do the U/S but no meet with our M/W. Here are some of the stats from my appointment.

I have gained a total of 5 lbs in this pregnancy so far....lost 5 since my last appointment :( Baby is right on track for their birthday of between 11-22 and 11-28. The heart rate was in the 160's again today, and was very loud. Baby was super active which was fun to watch....I am getting SUPER excited about the new birthing rooms that are opening the end of summer at Phoenix Baptist. They will have birthing tubs, no restrictions, real beds, and the total care of midwives. I am also excited because as long as nothing is wrong with baby (ie. meconium, low birth weight, low apgar, or gbs+) we can go home in 6 hours after baby is born *cue the angels singing* they also do not care if both siblings are present, regardless of time of year.

Baby is REALLY consistent on their wake/sleep cycle already. Tristan was this way too, and it seemed to transfer over into his real life after he was born. Baby is always awake at 930PM, for around 10 mins, then drifts off to sleep. We time it, and sure thing...there it is "thump, bump...thump, thump." I love that feeling by the way.

My legs are starting to run out of spots for my iv...and that sucks. Today my midwives discussed whether I need to move it to my tummy *scared face* OUCH. Hopefully the infusion sites will heal up and I can continue to put it in the fatty part there...because, let me tell you..the thought of peircing a needle in my belly really freaks.me.out.

We have another ultrasound scheduled on 7/28 since I continue to lose weight and have horrible vomitting episodes. I will update you then on how it all goes.

Saturday, June 26, 2010

18 weeks pregnant...and feeling it (in a good way)!

18 weeks have passed since we first started this journey so I thought it was time for a REAL pregnancy update, not one talking about a stupid pump or vomit or medication! I am going to try and do these monthly, so...here is month 4.

The baby is moving A LOT...boy do I feel it. Shannon has also felt baby move, and he was so happy...it was a great moment to share together. As a mama, here we are feeling all these amazing things, moment by moment, that at times I am sure that most dads may feel a bit left out...I think once the baby is at a gestational age that their tiny movements can be felt from outside the womb, it seems like it feels realer for the dad's when they can feel it too.

I am finally not as tired as I was in the very beginning, and let me tell you...that is an awesome thing. I am still in my regular clothes, only a few of my jeans have started to get tight..for now I refuse to let them kick me out. My solution to the tiny tightness is by ghetto rigging my jeans and using the rubber band method, works GREAT, and costs NOTHING! Total weight gained so far...about 6 lbs, feeling great overall, and loving this baby bump. I will try and post some pictures, haven't really posted any before, because...well, there wasn't anything to show yet!

Cravings...not many. I have been trying to eat as much as can be tolerated, mostly raw foods, slushies, and fruit. Just recently, red meat has been a HUGE turn off, so, holding off on that for the time being. Seafood is something that I am surprisingly able to tolerate really well..YUMM.

Being pregnant in the summer SUCKS. I wish it was about 10 degrees cooler, and that I could go swimming :( My solution to staying cool...popsicles, and lots of them. I also make fruit slushies and smoothies and that REALLY helps. I guess my favorite "snack" of sorts is frozen lemonade...soooo good.

Trinity is super excited about her new baby sister or brother. We have gone through the video of when she was born, and pictures of Tristan's birth to refresh her memory. She can't wait to hold baby, neither can I.

I will keep you updated on baby 3 as change happens. Stay tuned for more Hydeman family news!

Tuesday, June 22, 2010

Update on my pump and pregnancy stuff

It's been a month since starting the zofran IV medication, and let me tell you...night and day people, NIGHT and DAY. Before being on the pump, I was sick all.day.long. Not fun. I would wake up in the middle of the night, vomitting uncontrollably, I couldn't eat or drink anything unless I wanted to see it again in 10 minutes. I lost weight, bunches of it, and I felt so sick. Baby did so good during all of this, he/she stayed strong and stuck around...boy are we happy about that. I can't express how much happier I am to be able to function semi normally (because we all know I don't really do "normal" all that well anyway ;) But now that I have raved about how well I feel, I thought I should mention the darker side *cue the scary voice*

A few Con's to the pump so far:
-Site changes SUCK. The thought of having to plunge a needle into my thigh every 2 days just makes my tummy turn.
-THE BURN! When I have really bad days, there is something called a "bolus" or "demand dose" it's basically 4 hours of medication in 12 minutes. This burns at the infusion site, you get used to it over time...but there are occasions that it hits me...OUCH.
-Forgetting about the pump...OK, this one, SUCKS. The pump comes with a handy shoulder strap, and when I sit down, I take it off and put it on the back of the chair (think purse, hanging on chair back). But there are times I forget it's attached to me, get up, and the IV comes ripping out of my leg. Not fun...let me tell you.
-Site infection. This has only happened to me a handful of times, but, it's something worth mentioning. Sometimes the spot where the infusion is will seriously irritate the muscle/skin tissue, and nice size knot remains. My nurses tell me to alternate hot and cold compresses, but I have a bump from a 12 day old site and I don't see it going away anytime soon.
-Headaches. This is one of the few side effects from the medication, so naturally, I would get it. Headaches and me go way back, and these are pretty severe.
-Dizziness. Another lovely side effect that I could do without. BUT, there is a lovely drug called "BONINE" it's for motion sickness, completely safe during pregnancy, and TOTALLY takes the dizziness away....make a note of that.
-Skin breakdown. I have ridiculously sensitive skin, hence the skin breakdown. Luckily, they sell a lovely product called "skin prep" and you wipe it on in lieu of an alchohol pad, it puts a barrier between my skin and the infusion site adhesive. I hope it helps soon, cause at this rate, I won't be wearing shorts or a swimsuit anytime soon.
-Just being attached to a device 24 hrs a day. It makes simple things seem so difficult. Such as: sex, baths, showers, playing tag with the kiddos, swimming, laying on the side with the site, working out, sleeping in general, driving....

But even with it all...at the end of the day, feeling that amazing baby growing inside of me...it's all worth it.

In my fake shopping bag(s) right now...

I know, I know...we have been over this. WHY do I torment myself with the thought of purchasing such lovely things, when I know that I can't and won't afford it. I think it's so freeing to click away, placing those little treasures into a virtual shopping cart and then just leaving it. I don't have the guilt, I don't suffer the blow to my pocket book, and I don't really need the stuff...ok, the diapers I need, but, not yet. For now, Fakeshopping is it.

...no, not the girl...just the girly outfits.



I am - June

thankful for my husband
happy for my awesome family
enjoying my pregnancy
still hopelessly in love with turqoise and orange, and even yellow too
absolutely addicted to fake shopping
liking this ever growing baby belly of mine
proud of my photography
wishing for cooler weather
in disbelief that Tristan is going to be 4 next month
dreaming about when I will have enough land for chickens and a fat garden
happy where we are in life. we have little, but some have none
optimistic
loving my messy house
saddened by the oil spill and all the life that has and will be lost
sewing and stocking up my cloth diaper stash
still wishing on stars and hoping for miracles

Sunday, June 20, 2010

Another picture to share

Another picture of baby 3.

Not sure if you can see it, but baby is kicking back, one leg up on knee and arm behind head....pretty relaxed!