Had a wonderful trip....sorta

I was able to take a trip home to see my new niece, Kendall. She is currently 6wks and about 10lbs.

Friday Tyler, I and my mom boarded a plane for the 3hour flight. Tyler hasn't been on a plane since before he was 2. I took his carseat on the plane with me and got him all buckled in. At take off Tyler let it be known that he did NOT like this plane and we needed to get off. Once in the air he was fine till landing that is. I was hoping he'd take a nap since I knew he'd be up later then normal, but this was not in his plans. He talked and talked and talked, played a little with some toys and let mommy read. For landing he found that it was easiest to hold onto one finger of mine. He was holding so tight my finger was a nice shade of purple/blue by the time we had landed. Once off the plane we arranged all the bags we had carried on. Remember I had my bag, camera and purse, I also had Tyler's diaper bag and his Medical bag and then his carseat. My mom had her bag. My sister came with the 3 girls to get us. We collected our checked bags and off we went to my sisters house. My mom stayed with my sister to help with the girls and Tyler and I went to stay with my sister-in-law.

On Sat we had Lily's 4th birthday party. She had her party at Rainbow Systems.

Tyler was ok playing on the swings until Lily's guests started to arrive then we got to hang in the party room. Tyler doesn't deal well with a lot of people or comotion.

After the party it was mommy's turn to party. I had made plans to get together with some friends and go out. We went to a bar called "Miss. kitty's" its a country dance bar but on Sat nights they play other music not just country. We had a ball, had some good drinks, had fun dancing and most of all hangin with the girls.

The rest of the week was visits with friends and family! It was a crazy busy week but I am so glad I was able to see everyone I was able to. Thanks to Keri, Jon, Mary and Don for taking the time to have us over for a visit! Keri and Jon you have both grown up so much, can't wait to see you again. Judi, Sara, Kathy and Jeremy thanks for taking the time to have lunch/dinner with me. I loved the time to be able to catch up! And of course my Sister in law for taking a day off!

Speaking of a day off, Amber took Wed off so we could do something with the boys. We took the boys here;

It was so much fun just letting the boys run and check out the sculptures. Here are some pic's of them.

copy from another blog.....

I saw this on a blog but loved it so much I had to share!

However, I wanted to post this to give you a glimpse of what the reality is when having special children. Sadly, so much of it is true. It may seem as if the person that wrote this is bitter in some way. Not the case. I think it's just reality and how they learned to cope. Who are we to judge?

Here you go!
Written by Ellen S. Ellen can be found at To The Max.

A Bill of Rights For Parents of Kids With Special Needs We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder "What if…" every so often. * We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/ Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people's ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it." * We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don't have to look into another child's eyes and answer the question, "What's wrong with him?"
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children's challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be "special" but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child's disabilities.
* We have a right to talk about how great our kids are when people don't get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they're infants, preschoolers and elementary school age, but when they're in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

A day full of unanswered questions

I need to start from the beginning; in Sept Tyler got sick with what we don't know. But in the ER his blood sugars were in the 30's and he was unable to keep them up even with sugar. He was admitted to the children's hospital and released just over 24hours latter. We have since meet with an Endocrinologist and began checking Tyler's sugars once in awhile. Last week Tyler was having his bad day. We came home from ST and he just laid on the sofa. About an hour latter I went to get him ready to have lunch with Brycen, only to find him hot sweaty and very tired. So I checked his sugars, 326 is what I got at first then I got another reading of 276. So I called our Ped, left a message. In the end after a lot of phone calls and another sugar reading of 260's, our ped wanted to see him. We know a few things no he was not getting sick (cbc came back normal), he had sugar in his urine but no Keytones, and we had one confused ped....sigh! She talked with our Endocrinologist and they both felt is was time for some blood work. So Friday morning after dropping off kids to school Tyler and I trucked down to the Endo's office to get paperwork. Turns out it was a good thing Tyler went to bed Thur night with sugars @198 and woke to 176. I was able to speak to Dr Y (Endo Dr) and he put a few more tests on his blood work. I took Tyler to get the blood draw done and what a big boy I have!! She stuck him and he looked at her and said "ouch" and that was it! 5 viles of blood and a good 2wk wait to find out if we have anything or can rule out anything.

So to yesterday we took Tyler to his GI appt, 2hour drive there and back. All I can say is Thank God for a good book! His appt had good points and bad, sad and happy points. He is currently 32lbs and 38 1/3" according to the GI scale, a growth from June when we were there. Dr J (GI Dr) said it could be this or could be that, but always backed it up with it couldn't be this because he has ABC but kids with this don't have XYZ and he does. So it was a 20 question game with no answers. Another Dr to say *He has stumped a lot of Dr's, he is not Text Book*, please please just tell me one thing I don't know about my son.....sigh! A few things he'd like to see. Dr J asked if he could speak to their Endo team up there (sure why not!), he would like to have Tyler go inpatient for a few days run some tests and get Endo involved and have them run some tests, he also suggested we get Nuro involved because of Tyler's tone and fatigue.

We have another appt in May with GI, but once I have his test results from the blood work I am to let him know what they are. Tyler has an appt on Nov 24th with Endo to go over his results and maybe get some sort of plan in place. So right now we are on hold so to speak. We have no answers to what this is, since my child follows his own beat. We have no DX as to what is wrong. So once again we hang in and wait. Not having a DX is hard, not knowing if you are treating him right or not is hard. Just once I'd like someone to say "We found it, we have a plan" but I realize that may not happen for months, years or maybe never! It really does SUCK!