Disney World Update!

Anyone one who knows me, knows I LOVE Disney. We have been on many trips and will be on many more through the years.
I always start planning the next trip as soon as we are driving home from our current one. I am going over everything we did, where we ate,where we stayed, every little thing, then I plan how to make it better. I figure out what we need to do, eat, see again & what we don't need to.

We always drive so I never have to worry about what I can and can't pack, or how much airfare is going to be. We leave on a Friday around 5 pm, drive till Saturday around 4pm. We stop to eat and go potty those first 24 hours. We then get a hotel Saturday night, and continue the last 4 hours in the morning. Yes, we are a bit commando, but it works for us. We have been doing this since Kaden was 15 months old.

Now Dennis always gives me such a hard time about all the time I spend researching & planning. He & the boys give me weird looks when I make my little note cards & laminate them for each day we are there. However Dennis is the first to admit it is all the neurotic planning and obsessing that makes our trips fun and go so smoothly.

So now for Today's update.
We leave for Disney World in 571 days or 18 months, 3 weeks, 1day
Yes, you are reading that right. We don't go till October 2013.
But, I get to book our vacation package in August of this year.
I also have to book all the sit down restaurants we are going to eat at while there in April 2013.
Yep, have to make dinning reservations 6 months out.

So I have things to look forward to and plan. Yes, that all seems so far away, but when I plan and do all this so far out it makes it easier to budget & save. Plus starting in January 2013 I will start slowly buying the things we are going to need to bring. I have found it is cheaper and easier this way. I just put all of it in our Disney bucket till it is time to pack.

So Yes, some might think I am nuts, but I really don't mind. Disney is my happy place and all of my obsessive planning and researching has made for some fun, stress free trips for us and others I have helped plan as well.

If you ever need advice or help planning a trip, you know where to find me!

Yeah, me neither!

Have you ever lost your 14 yr old in the grocery store?
Yeah, me neither.

Haha, I actually thought I did last night. I was scared for a brief second. He was there a second ago. Where Is Travis???

It is no secret I am a bit of an airhead. I really try hard to not let my kids see it, but sadly Travis knows my secret.

We went to the store last night and Tessa was sitting in the cart, Kaden was walking on my left side, and I thought Travis was right next to Kaden.
I look over at him and there is no Travis. I look behind me No Travis. I panic and say where's Travis, what happened to him?
Kaden starts smiling, and Travis says "I am right here." And yep, there he was right on my right side!!

I still have no idea why I didn't look to the right, maybe cause he hadn't been there the whole time so why would he be there now?
I don't know, I just know I thought he was gone.

I don't think I'm perfect

This post was inspired by a comment made to me on Facebook by my cousin. I spend a lot of time thinking about things while I am rocking Tessa, mainly it helps me keep from rocking myself to sleep too.

She had made the comment to me about getting respit care for when things get hard & I need a break. She had said "I know you like to pretend you can do it all, (said with love) or you do live up to your nickname." ( my nickname is Coo-Coo, I'll tell you the story later)

Now I have been thinking about this for a while. There are a few things that should be known about me to understand why hell would have to freeze over before I will leave my kids with anyone other then my husband, my sister-in law, my step-mom, or Travis's daycare lady when he was little.
My brother and I were left alone when were 7 & 9 years old, not for an hour or 2. We were left alone for the whole day & most the night. I remember being left at strangers (to me, not my mom) houses when I was 4 or 5. I remember waking up in a strange dark house wondering why my mom didn't take me home & when was she coming back. I could write many, many posts about my childhood & maybe someday I will, but for now, no.

I don't ever, ever want my kids to think I have left them, don't care about them, or don't want them around. My kids are my world. and there is nothing so important or special that I have to do that would require me to leave them.
I am with one or all of my kids constantly. I rarely go to the store without one of them with me. I don't get much sleep because I choose to not let Tessa cry herself to sleep. I don't want her to be sad or scared in the middle of the night & wonder why I am not there to comfort her. Now, I do comment on Facebook about lack of sleep, energy levels of my kids, needing a break, but the reality is I am venting. I wouldn't change one thing about my kids. I have made the adult decision to bring them into the world, they are my responsibility. I don't for a minute expect someone else to raise them or watch them for my own selfish, personal fun. Dennis & I have made the decision that our time is when they are grown, for now vacations, going out to dinner, everything includes the kids. Maybe we feel this way because we have known each other for so long, we have traveled and done fun stuff before the kids came. I don't know.

Now back to not being perfect.
I offer advice and suggestions to others based on my experiences with 3 kids. I have been through 7 surgeries with them to date. I have been through sedating Travis for tests, I have been through extreme illnesses, hearing loss, Aspergers diagnosis, and life with it for 7 yrs, IEP's, speech therapy, now the whole Down syndrome stuff and everything that goes with it.
I have a lot of life experiences with many things. I also have been blessed with children with "special needs" and as such there are things that are too hard to explain to others. I think most people who haven't seen what my daily life is like would be shocked. It isn't always pretty, it isn't always ugly either. It is what it is and I do it day in and day out because I have to, I choose to. I wouldn't change a thing about it all either. I love my kids.

I have learned over the years that you can't keep your sanity with all this going on unless you connect with other moms who have been there or are there. Almost everyday after school I let the kids play and I hang out and chat with 2 other moms who have children on the Spectrum. These women are the best. They are funny, they understand, and they are real about it all. Sometimes thing are funny, sometimes they make you want to scream, but it is all easier to deal with when you have someone who knows and understands and can laugh or cry with you.
I also have an amazing Down Syndrome parent group I go to once a month. They too are a great help. Some are still new to it like me & some have been on this journey for many years. We all can relate and they are a great resource to have. Sometimes they laugh, sometimes they want to cry, but they are always real. Having a child with Down syndrome is a challenge, but it is also fun and rewarding.

And even with all this I have one "typical" child to balance in the mix.

I am not perfect, I don't pretend to be, I am real, and I try to offer help and advice when & where I can.
Some days my life is chaotic, messy, insane, busy, frustrating. But it is also so rewarding, fun, happy, and incredible.
I don't have it all together, but I try. I also try to find something good out of every situation, to find something to laugh about and to stay as positive as I can. The one thing constant in my life is it is funny, some days I have to wonder if I am part of a prank show cause it is that crazy.
I am an airhead, I am stressed, I am being pulled in many directions on a daily basis, but I have to keep my head up & carry on. Life is too short to not have fun while living the icky parts.
So.... No I am not pretending to do it all, and anyone who knows me, or has seen my daily life first hand would know that.

Another reason to hate my health insurance

It is no secret I hate my health insurance company. Well, that isn't really fair, I do like some things, but most things make me so angry I become "that crazy woman screaming at them"

First a little back story.
When I became pregnant with Tessa I had to call and get prior authorization to go to the hospital to give birth. Yep, how stupid is that. Now they say it is just their policy. Also you have to agree to sign up for their completely voluntary health screening, where a nurse calls every month to see how your doing. The reason I say you have to agree to this voluntary "perk" is because if you don't they MIGHT reduce the amount they cover for your delivery.  Pretty tricky.

Now fast forward to Tessa's birth. I have an emergency c-section, Tessa spends 4 1/2 days in the NICU, she doesn't come home with me, but does come home the next day.
I get a call from the insurance company and their "expert" does not feel it was necessary for Tessa to have stayed 1 extra day in the NICU ( they say she was there 5 days cause they count the whole day she was born even thought it was at night). I guess the NICU doctors and her pediatrician are idiots because they said she needed to stay. In fact they were thinking about making her stay 3 more days.
A not so nicely worded letter from her Dr and suddenly they have a change of heart and will pay for the last day!

Fast forward to September last year. I want to get Tessa private PT. They say they will pay for an evaluation and decide if she really needs PT. I ask them why seeing as she has Down syndrome and babies with DS need PT. Doesn't matter they will decide. They approve it, all is good. We only went 2 times Tessa hated it.

Now fast forward to yesterday. I get the mail and there is a letter addressed to Tessa. The envelope says it is is personal and to be opened by the addressee. Ummm....Sure no problem. 
I open it and it is a form from the insurance company asking us ( Tessa) to fill out the back or call them about a visit to Children's Hospitals & Clinics on September 30th 2011. Oh, but it gets better. The form is asking if the visit is the result of an accident, injury, or a work related injury. They also want to know does she plan to file a claim with different insurance or workman's comp. Also has she gotten a lawyer?
All I could do was laugh...at first.

I called the company give them my name, relationship to Tessa, her date of birth, then I tell then I don't know what that visit was for so they need to tell me what the claim was for.

Wait for it, you will not believe this one.......
THEY CAN NOT TELL ME ANYTHING!!!
Why??
Because Dennis is the policy holder for the insurance.
Now, let's guess how well this went over with me??? Hmmm.... Yep I lost it, and they got an earful.
I am her mother, yet they can not discuss her medical stuff with me. They need Dennis to call and give them the info they need. HAHAHA Yeah, ok, you try that!
I told the man that he was not going to get any info out of Dennis, because Dennis doesn't have a clue about any of that stuff. I said a few more not so nice things, and yes, the F-word went flying a few times too.

I called Dennis at work and told him what was going on & that they would gladly talk to me if he gives them permission to discuss my daughter with me.
OK, now guess how this went over with Dennis???? OH, not well. Needless to say I was the calmer & nicer of the 2 of us to the insurance company.
Dennis told them he had no idea about anything medical because it isn't his F***ing job. IF they wanted to know something they needed to talk to me, he has no F***ing clue.

Surprise they called our house left a message, and were so nice and willing to talk to me when I called back.
Guess what the visit was they were questioning?
It was the Physical Therapy evaluation. They wanted to know if she was having one because she had been injured or in an accident. REALLY??? I know for a fact the insurance company knows why she had it because I had to do a prior authorization for it. They know she has DS!!
I tell the lady she has DS, and that is why she had the appointment. The lady then asks, "so she wasn't injured or in an accident?" I kindly, yet very sarcastically say " Nope she was just born with DS, nothing else, just DS."  Then the ever so smart lady says " Oh, OK so there isn't anything else that happened for this visit?"  Ummmm......I again say "No, she was just born with DS."  The she says " OK, well I guess we can close this case and you can through the paper away we won't be needing any of that info."

I hate dealing with health insurance companies!!

Poor Tessa

Poor little Tessa was running a fever for about 7 days last week. She was miserable, and wasn't sleeping much. I felt terrible because she would just scream in pain, and I couldn't help her. She would grab our hands and sign "pain" but we didn't know where the pain was.
Even though she was miserable she still smiled and laughed from time to time. I knew she had 4 teeth trying to come in: 1 on the bottom, 1 canine, 2 molars (one on each side on the top). I took her to the Dr 2 times where she was tortured and screamed more.
She had her ears checked, ears cleaned and flushed out, tempanagram, her finger poked, and they cathed her for a "clean" urine sample. And what results did all this stuff during 2 separate visits bring???
NOTHING!!!  They said she looked like she might have some fluid and the tempanagram was not good either but they decided to not treat. Yep, NOTHING!!

Her first ponytail. Yeah, she isn't impressed either. Poor sick baby! Hey, Kaden!

I had finally had it and took her to the ENT on Friday and she freaked out when they tried to look in her ears, but sure enough they were infected. Finally some relief, maybe?

The meds seem to be working, but she has tummy issues from the meds and.....Yep, she has a flame red bottom!
Poor baby screams and shakes when I change her pants. She get so upset she stops breathing. I feel terrible but I have to change her. We have started feeding her yogurt with live active cultures to help with the tummy issues and icky diapers. I pray her butt gets better soon, cause her ears are on the mend.

She is still cute even when sick!

On a lighter note!

So my last post was serious, but it needed to be said.

But, now I have a little bit of happiness....

In 583 days I am going to Disney World!! Sure that seems like a long time, but I need something to keep my sanity some days. Besides that is really only 19 months and 4 days!! 

1 year ago

I was driving this morning to take Tessa to the Dr again, and I felt sad. It was one of those times were you just tear up for what seems like no reason, but there is a reason.

I hate when this happens, but expect it from time to time. I was told that sometimes it takes a good 5 yrs to completely come to terms with a DS diagnosis. But this wasn't a sadness induced by that. This sadness I discovered was because I realized that 1 year ago, around this time my sister in law was here. I was sad because I was missing her & my brother and their kids.

When Tessa was born it was a happy time, yet it was stressful and incredibly sad for me. I needed help, comfort and understanding, yet the only people that were there to do it were Dennis, my step-mom, and my sister in law ( even though she was in Texas). I in a matter of a few hours learned that not only was my health at great risk due to my high blood pressure, but so was Tessa's. I was scared to be delivering her 4 weeks early & knowing she was going to be tiny, but there were many unknowns as well. Would she be breathing, would her heart be OK, did she have any other problems that weren't detected. I was scared, yet trying to be strong for the boys. I had my step-mom, Dennis, & the boys with me that night yet I was missing my sister in law.

 My surgery was a bit more complicated then it should have been & because it was I took a long time to recover. I tried to pull it together for Dennis & the boys, but I wasn't doing a good job. I of course had my step-mom willing to do any and everything I needed. I was just overwhelmed.

Then the call came about a week or 2 after Tessa was born. It was Chris & she had a plane ticket to come see me and help for a week. I was never so happy to see anyone before. I needed her reassurance that it would be OK, that Tessa was going to be OK. I can't even explain how much I appreciated her coming, how badly I needed her, not only as family but as a friend.
It was also when she was here that Tessa got to meet Tessa & her mom, Paige. I was glad to have Chris with because as excited and happy Tessa was to hear I named Tessa after her, I worried about what they would think of her.

Tessa is an amazing girl. She is my nieces best friend since 1st grade, she has a wonderful family and she is so very pretty, smart, funny, and loving. My fear was did they know Tessa had Down syndrome? What would they think? Would they feel insulted that I named my daughter after their amazing daughter. Would they just be saying she is cute to be nice, don't they see she looks different. These seem like strange things to worry about but I was.

It was all this going on in my mind, and I was still trying to wrap my head around the fact that Tessa is the last baby I will ever have. Yet I didn't have to feel so alone or scared, I had Chris here.

So today I was thinking back to what all was happening 1 yr ago today, and how far we have come and how big Tessa is. I was sad because I missed my family in Texas. But I also had happy tears because I have an amazing, beautiful, smart daughter & she has so many people who have embraced her, and love her like she was part of their family. She will always have family to help her, look out for her & love her, but she will also have a very special someone named Tessa who will do all that for her as well. I will always be grateful to Chris & Samantha for bringing Tessa & her family into our lives. I will always be grateful to Tessa & her family for loving and accepting Tessa for who she is. But I also am so grateful, happy and honored that Tessa is able to share the same name as someone so amazing and special.

So today's tears are because I miss my family in Texas so much. I'm sad because they don't get to see her as often as they & I want. Today's tears were also for the incredible people that love Tessa close to home and far away. My fears 1 yr ago were silly, but they were true fears at the time.

I have to wonder what I will be saying 1yr from now??

Welcome

I have always thought about doing a blog. I would use it as a place to share what I am thinking, but never did it. I have thought of doing it often for almost 10 years but really didn't know how or if anyone would read it.

Then Tessa was born. I started reading blogs about other families with children with Down syndrome and it got me thinking again. But, I honestly don't think I could do a blog only about Tessa & DS. I have so many other things that are going on in my life that I wouldn't feel right having it about her and her life.
So I thought about it, hmmm...

I have 3 amazing kids, 2 happen to have "issues" and the 3rd is just plan funny some days. I started thinking some days my life is boring, but others days I wonder if I am on a hidden camera show, because you can't make this stuff up.
I have found that if you take life too seriously it will ultimately suck.

This blog is about my life, the good the bad, the funny. I have issues I have to deal with that aren't always fun, but maybe someone can laugh, cry or learn a few things with me.
I also have many thoughts that pop into my head multiple times a day. I do my best thinking when I am in the shower & in the middle of the night while I am sitting in the dark rocking Tessa.
I have views & opinions on many things. Some you may agree with others maybe not.

I also am a huge Disney nut. I love any & everything Disney. We travel to Disney World as a family every 2 to 3 years. When we go we do it right. Our trips are 12 days/11 night, and frankly that isn't long enough for any of us. I plan and research constantly. I will blog about our trips, planning stuff, anything I think of. I am more then happy to help others plan their trips too. This next trip is a big one. This is Tessa's 1st trip and I couldn't be more excited. All my kids 1st trips were big deals.

So Welcome, I hope you will enjoy reading my life, thoughts, opinions. Please feel free to leave comments or email me questions. I try to keep it light, but with Aspregers, Anxiety, Down syndrome & excessive energy in my kids lives, and a husband who works a lot, I sometimes get serious. 
But it isn't often!

And So It Begins!

I have thought long and hard about starting a blog. I have always wanted to but never had the nerve. But It finally took the birth of Tessa to push me into it.
This blog will be about my kids, my life, my love of Disney, and anything else I happen to feel like writing.