I cried !

The therapist said all of a sudden Kayden would progress and they were right ! This week Kayden not only started clapping but also started to army crawl ! It brought tears to my eyes to finally see her reach her milestones ! I know we have so much farther to go but it was so neat to see her be able to do things ! I am so proud of her !

We dont say that !

Today at work, we were talking about teenagers during lunch. One of my co-workers say "They're retarded" I looked right at her and said

"We dont say that. they have the mental capacity, they just choose not to use it !"

YEAH ME ! I am very proud of myself. I dont always say something and then later, want to kick myself for not saying anything. But not today !!!!

My favorite Gala pics !!

ITs confirmed- she is a monster !

Well we took Kayden to the dentist for the first time. She got her bottom tooth and now it appeared that her fangs were popping through. So I was concerned about the rest of the front teeth and I read that for special needs kiddo it is good to have them checked by the dentist around their first birthday as preventative. And since everything that could go wrong has, we decided to go ahead and have her checked. Out dentist is amazing- I already knew that with Caitlin ! but his staff arranged an appt that was at a time that is more quiet and set in a room with less stimulation. Kayden feel asleep right as we pulled into the parking lot and started to wake up when the Dr came in the room. He checked her out and told us the following..... Her muscle tone is good (YEAH !! Huge relief so she shouldnt have problems with speech) and her pallet is good (YEAH gain !), he feels her teeth and everything seems good. He said that there is nothing wrong with her fangs coming in before her front teeth, even though thats not the "norm" it does happen and she will just look like a vampire ! At which I corrected him, reminding him she already has one in the front bottom and said it will be more like a jack-o-lantern. To which he said "how we know what she will be for halloween" Except lil punkin was a punkin last year- she was going to be a lady bug this year !! The only concern was that he did not see the teeth next to the top front teeth. He said the could be delayed and be there and him just not be be able to feel them, but he did talk to us about the possibilities they are missing ! They wont do too much for baby teeth but if the big teeth are gone too then they will need to do some adjustments. We will cross that bridge when we get there !!! Kayden did great through the whole thing and never got upset with him poking and pushing in her mouth, in fact she even smiled about it. I wish I could post the pics but they are on our phones and Im not sure to get them from there to here ! He also told me 1. they are recommending the preventative vistis around age 1 for all kids, 2. watch the amount of juice she gets so it does not lead to cavities, and at age 2 he wants her on a straw sippy cup ! and he wants to see us again in 6 months ! This was one of the BEST Doctor visits we had in a long time. We didnt walk out feeling "great, one more thing" We feel good to know that her front teeth are there and that its okay for her canines to come in frist ! WHEW ! What a relief ! and she got to go home with a soft baby tooth brush so we can start introducing teeth bruching ! awwww her first tooth brush ! My baby is growing up !

You had to know it was coming

If you know me, you know that I competed in beauty pageants ! Including Miss Texas USA ! Loved it and the confidence it gave me as well as the stage presence and ability to get in front of groups. I know everyone has their opinions of pageants (especially children pageants) but since this is MY blog, mine is the one that gets posted ! I put Caitlin in pageants starting at 4 months old. this has been a very positive experience for both of us and it has been very positive for Caitlin. So you had to know that at some point Kayden would get to do one too !! Well that some day came this past Saturday ! I wasnt sure how she would do because when she sees someone new she just stares at them and doesnt even smile, so I was a little worried how she would do in front of everyone. Well I had nothing to worry about ! She got on the stage and smiled like there was no tomorrow and "we" blew kisses and then she talked to the judges !! Her personality really came through and she won her age division !!! Here are the pics !

What do you say ?????

One thing that has been a positive of Kayden having special needs to getting to know other families of special needs children. It has allowed me to be exposed to things outside my bubble that I never would have before. I found out that babies can have strokes before they are ever born, I have learned how unfair life can be, how others deal with issues have have been able to learn from it. But this is the first time I have had to deal with this.........

A few months ago I meet a mom here in town who had started an organization (www.coopersquest.org) named for her son who was diagnosed at 10months with a genetic disease. We had talked back and forth and compared notes and talked about getting together to talk the kiddos for a walk, and then I hadnt heard from her, until friday when I got this email........
"Hi Mara.
I'm sorry that its been awhile since the last email. Cooper's disease progressed very rapidly in June...it was a really hard month for us. Cooper passed away on July 8 and I have been on a leave of absence...I'm just now getting around to emails. I think about you & your family all the time. I would still love to meet you sometime and just be able to talk in person.
I hope everyone is doing well."

what do you say back ??????
That Kayden is improving and doing really well ??
I was heartbroken....
I cried, and cried, and cried
and then I went home to hug my children

change of heart

Today was going to be the day I got off my butt and quit putting things on hold. and then I read the blogs I follow, and my heart sunk. Little Zoey who has been through so much- DS, heart surgery, seizures, Lukemia, and has been through the treatments for the cancer, may be in remission. I already lost my friend Johnny to the same Cancer. How can life be so unfair to this little girl ? to her family ? what did they do to deserve this ? To think this cancer could take this childs life has left me in tears. It has drained my motivation for the day. It makes me appreciate my own situation so much better. It makes me want to go home and hug my daughter for everything she doesnt have (instead of thinking about everything we have been through this past year). I so dont understand life. I dont understand how things like this can happen. All I can do is pray this little girl will be okay. Although at this point I dont believe much in prayer anymore.

making it private....

after careful consideration- I am looking at making my blog private.....

so, if you read it, PLEASE let me now so I can send you an invite before making it totally private

thanks

I'll show you my scar if you show me yours....

Kayden's first time on the beach

Kayden getting to meet her great grandmother

Kayden getting to meet Dylan

They got along together great ...hehe

When we were preparing for Kayden's surgery, Wonderful Jeanette showed me a blog about a baby who had just had heart surgery. His name is Dylan and his wonderful Mommy Laurie did a great job of posting pics and sharing his progress on his surgery. It really helped me to prepare and know what to expect with Kayden's surgery and it made all the difference when we had ours.I know Laurie lived in Mass. so.....

We went this past week to Boston. My grandmother turns 91 and her health is failing. It may be the last time we get to see her, but more importantly it maybe Kayden's time to meet her.

When I knew we were going to go, I got in touch with Laurie and she only lives about 30 minutes from my dad so we got to meet them in person.

Dyan and Kayden hit it off right away, see for your self !!!!

Way behind

Kayden opening her presents
Kayden's special guest winnie the pooh !!!

Kayden eating her cake at her party
Kayden's cake mommy made her
Kayden on her actual birthday with another cake......

I am so behind. things have been so busy and blogging has been on the bottom of the list...
Kayden turned one July 4th !!!! YEAH ! What a year it has been, and looking back everything seems so long ago... the stay in the NICU, the heart surgery.........
she is just excelling so well and her personality is coming out so much !
So here are her birthday pics......

Kayden's 1st bday pics.....

this was at the end of the shoot- she passed out- poor baby was so tired, we were there for 3 hours !
Kaydebug Ladybug- in her ladybug dress
Gotta have red white and blue pics for a July 4th baby !

This is one of the few she was looking at the camera instead of trying to eat the flowers : )

That goodness it is almost July !!!

Wow this month as been so crazy, I am so glad that July is in sight !

Teresa graduated- a day I never thought would come. We had so many end of year events. She received 2 scholarships and we had band concert, award ceremonies, and we even gave her a graduation party ! It was exhausting but well worth it. Sad part was her mom didnt come- not only did she not come but didnt call, email, or send the kid a gift ! Teresa is taking it pretty sad which is pretty heartbreaking ! I told her that I was glad her mom didnt come because that was my moment ! that was my yelling and my argueing that got her across the stage ! We had a nice moment and both cried ! Now I have to get her off her lazy butt and get her to register for college so she doesnt losse those scholarships !!!

Caitlin finished 3rd grade and is off to 4th ! Of course straight A's !!! We had her birthday this month - a sleep over, our first ! The girls were so good that I may even be talked into doing it again ! Caitlin is going several weeks to camp at the gymnastics place- they keep them active and she needs the constant busy !

We had the fund raiser for Kayden and I am happy to share that it did amazing and will be a HUGE helpwith the amount of medical bills ! And it was ALOT of fun ! Teresa even learned to play roulette !

Robert and I renewed our wedding vows for our 10 year wedding anniversary aboard a party boat on lake travis with some friends. It was a really fun time and now we are looking for reasons to get another boat !!!

Kayden turns one on saturday ! Gosh how the time flies ! We did a small party for her this past saturday. With her being born on a holiday most people were going to be out of town so we did it early ! We had a special guest appearance by winnie the Pooh ! she went right to her (him- it- whatever- I say she cause Teresa was in the costume !) We did her 1 birthday pics yesterday ! WOW a year old !

So we have hosted graduation parties, graduation dinners, 2 birthday parties and an anniversary ! Whew ! I am so glad this month is over and I can rest !!! Well- actually no resting, I have alot of stuff to cetch up on that got put to the side. Oh well...........

Where is Mara.........

Well I havent been blogging cause I have been very busy and when I am not busy- I'm on facebook ! I was so anti facebook but now I'm addicted ! We had Teresa's graduation, Caitlin's birthday, Kayden's fundraiser, and this saturday will be our 10 year anniversary and we are renewing our vows on a party boat !!!
But- better late than never- here are the pics of Kayden with Craig......

Kayden update

Didnt think to add this until I read a post that said Kayden looks good. In those pics she looks great but......... yesterday we got a call from daycare that she had 102 and had not taken any fluids. So off to the Dr rob went thinking it was a stop on the way to the hospital ! Our other Dr would have sent us to Dell but we switched to a doctor familiar with special need kiddos. turns out she has an ear infection and something funny with her lung on the chest xray so the Dr increased her neb treatments and gave her an anitbiotic to clear everything up ! And the best is she slept through the night last night !!! Just in time for my 4 nights by myself with her (rob working) she had not slept the 4 nights before that !!!

But she does look GREAT in those party pics ~ smile

Kayden and her first party

Kayden was invited to her first birthday party this month. I couldnt go cause I was getting Teresa ready for Prom, so Robert took the girls. A friend took these and I had to share. She didnt enjoy the slide much (see her face) but she loves that exercise ball !!!

Another poem to share

"My Own Special Angel"
by Norma Henneke
1977

As we walk to your classroom my heart swells with pride
for the children all run to you to walk by your side.
They hug you and greet you; they all seem to know
just how much you need them and love them all so!
You march down the big hall with your most grownup stride
and turn and wave bravely, "Bye, Mommy! Bye-bye!"

Such a big girl, my Misty! You give life your best
though sometimes even the smallest thing can be a big test;
like struggling to run just as fast as the others
or trying your best just to straighten your covers;
things like coloring, swinging or brushing your hair.......
Sometimes Mommy feels that it just isn't fair!

Once late at night as I lay in my bed
I cried just to think what a little girl had said:
"Why's Misty so dumb? Can't she talk? Can't she run?"
I said, "Please be nice to her, please don't make fun.
See, God didn't make her as perfect as you
And I think he would want you to help her, don't you?"
She shook her head slowly and gave a small smile.
She had understood perfectly and that made it worthwhile!

Yes, sometimes it hurts and I don't understand
How God could have done this as part of His Plan.
Yet each time I hold you or we kiss goodnight,
I know in my heart He did everything right!
You're my own Special Angel, and how lucky I was
To be chosen by God to receive your sweet love.

My own Special Angel, sent straight from above!

We met a hero this weekend

I know I havent blogged in a while but things have been so crazy here with the end of school approaching and Teresa graduating !

I do want to share something exciting that happened over memorial day weekend. We had the wonderful opportunity to meet and talk with Craig Blackburn. If you have never heard about Craig, he graduated from regular classes from a school in Louisiana, he holds a job and the grocery school, he is a member fo the knights of Columbus, he helps run a program called best buddies which matches special needs students with typical peers, he is a Motivational Speaker who travels around the world speaking, and he is engaged to his girl friend, Heather. And if all those things are not impressive enough- Craig has Down Syndrome. Take in mind, that I am a GODA- Grandchild of deaf adults- am are aware of some of the limitations of special needs. But I have never met an adult with special needs to the extent of someone with Down Syndrome. I was very impressed with everything that Craig has accomplished. He had just come back from a speaking engagement in Qutar and has been asked to speak in England, Iceland, and Bangladesh. To say he is limited is a misinterpretation- he has done more and traveled farther then most people I know who don’t have “limitations”. Craig had also travel to Las Vegas with his step dad, who was there for work. Craig traveled the strip and even took public transportation. On his own while his step dad was working. Something I don’t even know if I would be willing to venture. My girls all sat and listen to Craig and his mom talk. Caitlin said she felt really good after meeting him- she is so soft hearted you could tell it touched her. And then I spoke with Teresa about everything Craig has on his resume and what could she say. I know that Craigs presentation “We Can” talks about special needs, his new power point is “Don’t Judge a book by it’s cover” . But after spending time with Craig - it gives you a new perspective on your own life. “If he can do it, I certainly can” Not only does Craig show you what people with special needs are capable of, but it motivates anyone without special needs and limitations to apply themselves. Craig is going to be back in town hopefully this summer, where we can actually watch him gives his speech- I can not wait !

We gave Craig Robert’s police baseball cards and Caitlin included a sticker- you could see Craig get lite up over the police sticker ! Boys will be boys ! Any of us who are married can tell you that our husbands are little boys at heart so.... We got the keys to the police car ... yes you know where I am going.... Daddy was upstairs asleep (of course Daddy wouldnt mind)..... We let Craig sit in the police car and Teresa showed him what everything was- but we didnt turn on the lights cause we didnt want to accidentally turn on the siren (didnt think Daddy would like to be woken by his police car going off) And we took his picture in the police car ! LOL Hopefully we were able to give Craig a little “feel good”in return for the one he gave us.

Better late than never...

computer problems fixed..... here are Teresa's senior pics !

Emotions

My sister called me yesterday sobbing hysterically.

She has a Friend, L, who she has know since she was 14. Around 3 years ago, L married P. Three months later he was diagnosed with a brain tumor. The had treatments done and it appeared to be improving. Last year they had a baby girl, A. Well the tumor got worse and earlier this week she called to tell me that they were stopping the treatments because they werent sure why he was getting worse- fromt he tumor or the treatments. Yesterday P had a stroke and died in L's arms. At 29 years old, L is now a widow.And this baby girl will not get to know who her daddy is.

I know that we have been through so much this year but I can not imagine what she is going through ! I feel so horrible and sad for by sister who was close to them. I dont have the words to tell her it will be okay. There is nothing I can say to make it better or to explain why life is so not fair ! Why do these things have to happen especially to good people. She works for the boys and girls club and he helped save trees !!! Why did my husband live and he husband die. I just dont understand why all these things happen.

Please pray for this family- help them to find the strength to deal with it and to be able to accept it.

And as usual- my work gets to see me with black smears down my face and puffy eyes. Although I am not too happy with work right now. They assume way to much. I am sure that they will see me and assume it has something to do with work and say crap about it having to do with something else- not knowing the truth- but what else can I expect from them. Oh well- guess I have to deal with it until I change jobs !

I know I am grown

I know I am a grown up but I am a Miley cyrus fan ! Runs in the family, not only is my daughter a Miley fan but I even saw her dad in concert (and have the shirt to show it !)

It is her last song ! thne climb. I looked up the words for robert and I am going to share them with you. I dont think any of us can read them and not be able to relate.....

I can almost see it
That dream I am dreaming
But there's a voice inside my head saying
"You'll never reach it"

Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on

'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa

The weekend

Last week I had been in a funk. It was one of those really bad weeks. I can not stand when people make assumptions. I dont like when people are in supervisory roles and have not idea how to be a supervisor. And sometimes, I dont like having to be PC and unable to express everything cause this blog is not private and anyone can read it. And lastly, I hate that I dont play the lottery, cause I really need to win so I can just quit my job !

Okay, off the soap box. On the positive note, I got to have lunch with a friend I hadnt seen in a while and it was fun to hang with another mom. and Friday Robert was off and we got to spend some quality time together- that was nice. Saturday we went to a potty training class. YES, I know Kayden is a little small to start that but you never know when they will have these things, so I would rather attend early and store the info then miss out completely and then they wont have another one until after that fact (seems to be the story of my life). that afternoon,robert took Kayden and Caitlin to a friends birthday party. this was Kayden's first party ! I was bummed to miss it but I had to get Teresa ready for prom ! Everyone liked her hair and asked who did it. Which made me feel so good cause it was me : ) I took Teresa and her date to a friends house where they were going with a nother couple and the other girls parents arranged for a car (hummer). To make a long story short- the guy driving the hummer was an old boyfriend...lol After I got her off, I took Caitlin to the movies and we saw Hannah Montana. I sat there in the theater thinking... I can not remember when I sat still for 2 hours. I really liked the movie and LOVE her new song the climb. If you have not heard it yet, go google the words. It really hits home and yes,...... I cried watching Hannah Montana ! On Sunday we got some things done and Teresa addressed her graduation invites. My fault but I didnt pay attention when I gave her the envelopes.She didnt realize there were 2 sizes and you only address the outer ones... well, I spent most of the day trying to fix it and thing who didnt need 2 envelopes..lol Cathy came over last night. i am sad to say that she broke up with her boyfriend saturday. We liked him, but as i told her, you dont stay with someone just cause your family likes them. If you know Cathy, you wont be surprised to hear she already has another love interest. GOSH these girls kill me sometimes.

I am lossing it !

I have to take a minute to blog because I am loosing it ! I know it doesnt help that I havent slept all night long in who knows how long.Kayden allergies are really bothering her- poor baby. I brought it up with the ENT last friday and asked if he would look in her nose. He told me she has a small nasal passage and he recommended a nose spray called xclear. This week things have gotten worse and she isnt really sleeping at night (which means neither am I). Last night was even worse and she couldnt even talk a bottle cause she couldnot breathe- greatsince she is laready under weight !. so I called the family dr this morning- who was full and said for her to see the PA. dont really feel comforatable with that since Kayden has a medical history. So I called the ENT and waited and waited and waited and waited (you get the picture) . So I called after lunch and get his nurse. Who said he says to use the spray ! Well- that $12 spray doesnt do crap (in my husbands terms). She informs me that in light of her heart issues the ENT doesnt want to see her and that we wants me to take her to the family dr ! yep- the one who cant see her either !! So the ENt doesnt want to see her with her medical history and I dont want her to see the Pa for the same medical history and the family dr is too busy ! ARGH !!!!!!! So I call another Dr ofc and they say we cant be seen until the 30th ! Heaven help me ! So if something doesnt break soon (and i wasnt referring to me- which is actually what is going to break around here) I guess we will be headed to Dell !!!!!I am seriously forwarding my mail there ! I told the hospital that on friday and they said they would save it for me when I wasnt there. So you may now contact me c/o the local childrens hospital where i seem to spend most of my life !

Hi Ho -its off the hospital we go

Friday, Kayden had to go back to the children's hospital for the testing on her ears.The rain was horrible and I never thought we were going to make it. It should have taken me 30 minutes but it ended up taking me an hour and a half ! The final verdict was the right ear is fine but the left ear has a mild hearing loss. Not a nerve issue possible because of the shape of her inner ear or because of fluid, but because of the shape they cant see in well enough to see her ear to know so we wait and watch and see what happens !

I took Teresa on Saturday yo get her hair fix (still from the damagethis summer from her mom) and then sunday we did senior pics ! Kinda scarey to see her in a cap and gown.I gave her an early graduation present which was a silver necklace that has 3 rings (mother, daughter, friend) and the card that came with it said something like " a daughter is a little girl who grows up to be your friend" and then something about when you wear it remember what you mean to me. she started crying - it touched me that my necklace meant so much. I was hoping it would and I was glad it did.

We went to a picnic at the park this weekend with some friends ! It was so nice out and so relaxing - we never get to relax anymore. We definitly have to do it more often.

I tried to add some of Teresa's graduation pics but again cant add pictures ! ARGH ! I will try again later ! And on the note of things that bug me .... I have when people dont RSVP !!! I am trying to do a get together for Roberts birthday/ thank you to those who helped with his heart attack and cant get people to respond if they are coming. Makes it hard to get food when you dont know how many are eating :)

You know you have a child with special needs when...

Not all of these apply to me but some do so it's pretty funny......

You know you have a child with special needs when...
by Carol AnCel

You compare ER's instead of grocery stores.
You compare your child's oxygen saturations.
You view toys as "therapy".
You don't take a new day for granted.
You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
The clothes your infant wore last fall still fit her this fall.
Everything is an educational opportunity instead of just having plain old fun.
You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
You also don't mind if your child goes through the house tooting a tin whistle.
You fired at least 3 pediatricians and can teach your family doctor a thing or two.
You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else will be there!
Fighting and wrestling with siblings is considered PT.
Speech therapy occurs in the tub with a sibling.
When potty training is complete, you take out a full page public notice in the Washington Post.
When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
You keep a daily growth chart.
You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
You phone all your friends when your child sits up for the first time, at age two.
With a big smile on your face you tell a stranger that your four year old just started walking last week.
Her medical file is several inches thick and growing.
You have a new belief.....that angels live with us on earth.

I'm loosing my sweet girl !

I am loosing my sweet girl and she is becoming that dreaded bad word...teenager. Or at this point, preteen ! She is getting sassy with a capitol S ! Last night I motioned to pop her mouth and she responded with "i'm not afraid to hit you" what !?! who says that to their mom ? When I mentioned telling Dad what she got upset and begged me not to, saying Dad is big and can squoosh her. Of course when I tried to tell dad he was too busy watching Dancing with the stars ! Yes, my husband watches that ! Also yesterday, I told the little boys she couldnt play so she wrote me a note that said "thank you for inbearsing me" Hooked on phonics works for her.. "in bear sing" but the rest of us spell it embarrassing. She is a great problem solver and spelling guesser and no- she did not do hooked on phonics.

I havent blogged in a while- things have been busy. My daycare was closed over easter so thursday we paid the nieghbor to come watch Kayden, Friday was a family effort and Teresa got her monday. She started eating some tablefoods and likes bread and mashed potatoes. She even ate an entire jar of carrots one night and jar of pears the next day but that was that was short lived cause now she would rather spit it back out ! And I do mean spit- some of it can go pretty far ! We have added PT once a week and she is still getting OT twice a week.

Teresa is doing really good. she gave me a very nice card on my birthday telling me how much she appreciates me. She is finally growing up ! We have been working on scholarship applications have one turned in and one going in tomorrow. On saturday we go to get her hair fix (still trying to recover from her mom coloring her hair this summer) and then sunday taking senior pics. Graduation invites have already come in and we need to start addressing them.

Robert is on light duty for 2 weeks and then goes back to work. this week is not a big deal cause he is in training. We went on 4/9 (my birthday) to the cardiologist and found out he has 4 more blackages (happy birthday to me) 2 are at 40%, one at 50%, and one at 70%. We are really watching his diet and trying to increase his exercise. We had been walking and will again soon- things are weird with my dad visiting. His birthday is next weekend so we are having a BBQ to celebrate he is still alive and to thank everyone who helped us during his heart attack. Robert spoke with the EMS guy to say thanks. the medic told him how happy he was to get Robert's message because he honestly didnt think Robert was going to make it ! the fireman had similar stories as well. I am SO glad I didnt know at the time how bad the situation was so I didnt freak out. I am just very glad it ended the way it did so I dont regret my actions. I keep playing the what if game. what if he didnt make it...should I have gone to the hospital right away ? should I have taken the kids? you know that horrible game ! I am just thankful that it ended the way it did and I dont regret worrying about the kids and letting the first repsonders take care of Robert !

As you can tell I am busy busy busy ! I had a nice birthday and my sister sent me money so Robert and I went for a couple massage. I am working with Teresa on her scholarships, graduation prep, senior pics, graduation party. We are plannning Caitlins birthday and our anniversary all in June ! WE decided to renew our vows and realized how important it is considering. After numerous ideas falling through, we decided to rent a party boat. I feel like I am planning a wedding all over again ! but not as big or as stressful !

Still alive

So I havent posted in a while. Things have been so crazy here and I have so much more on my plate after Robert's heart attack. We got evaluated for PT for Kayden and the PT was very excited with where Kayden was and how she is doing ! Almost made me cry ! She was surprised how well she was doing so soon after her heart surgery. It was nice to hear that she is doing good instead of she is lacking ! We are adding Pt so the OT can work on her eatting. She is normal and pushes the food out when you feed her. It takes us forever to get her to eat some and we get tired and frustrated. So I am loving the thought of an angel coming to get her to eat and taking that extra stress away from me ! Think we can get her to potty train too ????? Thinking positive !

Robert is doing well.It is hard to believe he had a heart attack a week ago. He is getting tired easily but we dont know if that is from the meds. He was supose to have cardiac rehab but the lady wont call him back to schedule it ! And you know guys- much more of a delay and he is going to say forget about it !

Caitlin is awesome ! Sleeping in her own bed and does not seem to be overly affected by robert's hospital stay. For those of you who dont know- I was hospitalized 2 years ago and after that Caitlin could not sleep by herself ! We had just recently gotten her to move back into her room so we were worried this would be a set back ! Looks like we weathered the storm okay on this one ! My very sweet and loving daughter planned a surprise birthday party for me last saturday. There was concern about doing it right after Robert's heart attack so I found out about it. She is so sweet and got my firend Melissa to help her. It was alot of fun and I have the best daughter in the whole world ! BTW- she cooked Robert and I dinner last night (her first time) making macaroni and cheese (it was not all the way cooked and was dry) but it was the best mac and cheese we ever ate !

Teresa is a tenager and now I see why my dad said the word teenager is a bad word ! I have been staying after her to do scholarships and of course she waits for the last minute. then when she goes to turn it in the teacher was out ! ARGH ! Then she was leaving for school yesterday with 2 shirts and a jacket and flip flops ! What happened to the rule NO FLIP FLOPS to school ?????? so I said she needed to put on real shoes ! (we have a long history of flip flops to school and having to take them away) she starts mouthing off. Her dad even tells her it is too cold for them and there goes the mouth and did not stop all the way to school ! Can she not stress out her dad a week after his heart attack over friggin flip flops ???? ARGH !!!!!!

So- my dad comes in tonight for 2 weeks (staying with me), my aunt comes in tonight too staying with my mom. Passover starts tonight, tomorrow is my birthdya, tomarrow is Robert's cardiology appt, and my day care is closed thursday- monday. always something.......

Robert update

Saturday we were getting ready for Alicias wedding. I was putting curlers in Caitlins hair and robert started saying his chest was hurting. I asked him several times if I needed to call 911 and he finally said yes. He then went downstairs to wait for them and yelled up to bring him some socks. First to arrive was David J.- he walked in and looked at Rob and said "Man, you dont look good". Daryl came next follwed by the fire dept. They had to wait for a medic out of Austin because our medic was already on a call. Once they got there, they loaded him in the ambulance and took him to the hospital. The officers wanted me to go but the kids were really upset and I didnt feel like I could just leave them. Caitlin was upset the whole time and Teresa lost it when they loaded him on the streatcher. Which I think didnt go over very well with the officers. I had already called my mom and she was on the way. We had a quick family meeting about what Daddy would want us to do. I got everything ready for the kids and my mom to take them (car seat/ formula/ etc) got dressed and ran to the hospital. WhenI go there- Robert's chief was already there and stayed with me while Rob was in surgery. Another Sgt showed up too (Oscar).

Robert says that in the ambulance he wanted to got to sleep but them told him that if he went to sleep he wouldnt wake up. He had a 80 % block and a 100 % block in one artery and that 10 minutes later, he wouldnt be here. -Something I didnt realize or maybe I would have acted differently. I was in that mode that people go into after someone dies- where you have to take care of the funeral arrangments and everything else and it doesnt hit you till later. Having just gone through everything with Kayden, It felt routine- another hospital stay, another heart issue, etc, etc etc. It hit me when I called David K and I said "Robert had a heart attack" and he said "oh my god" then I heard it all at once "robert had a heart attack oh my god "

I got rob in his room and settled, ordered his dinner etc, and then he said for me to go to the wedding. So I did. Teresa had really stepped up to the plate and helped Caitlin get ready and helped my mom and took care of Kayden. after the wedding, I dropped Kayden with Lisa and took the girls to the hospital to see their dad.they made an exception and let Caitlin in to ICU- you have to be over 12. Once they girls saw him they were much better. Roberts Sgt partner, Larry, had stopped by too to check on him while we were at the wedding.

Sunday they had moved him out of ICU and he slowly started to have some visitors (Rick and Jill and Cathy and Rashwn, and David J stopped by- I think robert really scared him) Robert, David J and Oscar had all go to the police academy together. Monday they sent him home ! He is on a handful of drugs and he can not pick up more than 5 lbs which means he cant even pick up Kayden !

Everyone has been great. A neighbor, Jennifer and Kevin, brought us dinner on Sunday night, and Monday another officer, Mark, brought over food (and flowers for me), Tuesday Debbie and Randy brought over dinner and tonight my cousins are ordering us food. Some of the officers went to our rental house and repaired the fence robert was working on for him.

He really scared everyone- we have been told that half the department is quitting smoking and yesterday someone said "half the department was on the phone onmonday making Dr appts" Keba is getting everyone checked out all the way down to his toe nails (hee hee)

Yesterday I took him to the drs office and they did an EKG and echocardiogram- it does not appear there has been any damage to his heart but we will know for sure when the Dr reviews everything. He sees our family Dr on thursday and the heart Dr next week.

Well- that is it in a nutshell- without all the drama and emotions this ordeal had !

911-POLICE, FIRE TRUCKS, AND EMS !!!!!

Saturday we were getting ready for alicias wedding and robert started complaining of chest pains. I asked him several times about calling 911 (saying that to show he was being dramatic) and to my surprise after the 3rd time he said yes ! Turns out he was having aheart attack !!! On my way to thehospitalnow- but will blog all the details later. Keep us in your prayers !!!

I know I've asked why..... have you ??

This was sent to me and I had to share......

This is about the best thing I've ever read as an explanation. We all wonder many many many times over WHY? Sometimes we wonder, "What did I do to deserve this?" or "Why did God have to do this to me?" Here is a wonderful explanation!

A daughter is telling her Mother how everything is going wrong, she's failing algebra, her boyfriend broke up with her and her best friend is moving away. Meanwhile, her Mother is baking a cake and asks her daughter if she would like a snack, and the daughter says, "Absolutely Mom, I love your cake."
"Here, have some cooking oil," her Mother offers.
"Yuck" says her daughter.
"How about a couple raw eggs?"
"Gross, Mom!"
"Would you like some flour then? Or maybe baking soda?"
"Mom, those are all yucky!"
To which the mother replies: "Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake! " God works the same way. Many times we wonder why He would let us go through such bad and difficult times. But God knows that when He puts these things all in His order, they always work for good! We just have to trust Him and, eventually, they will all make something wonderful!

God is crazy about you. He sends you flowers every spring and a sunrise every morning. Whenever you want to talk, He'll listen. He can live anywhere in the universe, and He chose your heart. Life may not be the party we hoped for, but while we are here we might as well dance.

Kaydens still not 12

ARGH !First I want to say that I hate computers sometimes ! Especially when they give me problems and I dont know how to fix them !!!

Yesterday on one of the YAhoo groups I'm in, I say a posting from a mom whos son is about to start the preschool program in my school district. Great I thought. soemone who can tell what they think. I was getting ready to email her and ask when I realized that I recognize the email and this person lives not only in my city, but in my subdivision, and on my street !!! So I left work early yesterday to meet with our new ECI person ! And I really like her. she gave me alot of info and guidence. And not only is she our ECI person, but her daughter has special needs and knows all about the therapys ! So I am really excited about working with her.

So after ECI- Robert took the girls to the carival at the rodeo and it was just Kayden and I.So I put her in her stroller and we went for a walk. We stopped by the house and the end of the street and introduced ourselves ! It is nice to have a face to the name and we got to chit chat for a little while. Turns out we have been to some of the same functions and had never met- although I knew of her and she knew of me through her sister in law and the HOA. On the way home we caught Lisa taking pics of Nathan in the flower beds. And they put Kayden with him and took some pics. At one point Nathans paci came out so Kayden put her thumb in his mouth ! lol and then when they put his paci baci in- Kayden helped him hold it in place.It was really cute and I will have to get the pics from Lisa. Except I cant add any pics to my blog right now cause computer problems !! I could tell I hadnt walked in a while and I was exhausted when I got home !

This morning Kayden had her appt with the peditrician. He did a follow up chest xray. You could tell Kayden is getting to be a pro with the medevil times contraption- and in fact daddy even made her smile during it ! Doctor said it looks fine but he is sending it to the radiologist to make sure. Her weight was only 11lbs and 15oz- we still havent broken 12 lbs. Not much but he was happy she is gaining. He wants to see her again in a month. Are we the only ones who have wellness checks every month ???? Good thing we like our Doctor !!!

I am definitly a superhero !

Saturday night Kayden wasnt feeling well, starting at 2am she was waking every 10 minutes tossing, turning, and crying.So basically I had to hold her all night and pat her back to sleep every 10 minutes or so. By 7 in themorning I was worn out. robert had come home and put her in her swing and Caitlin got up. I asked my super hero in training (caitlin) to keep her for a couple of hours so I could PLEASE get some sleep ! And slept from 7 to 9am when Caitlin said "you dont have to get up, but I would like you to". I then proceeded to wash what seemed like 100 leaods of clothes (with Caitlin's help) and it was actually two or three loads- but they were big ones ! And work on our taxes, take care of the kids, do odds around the house etc. LAst night Robert was off so he had Kayden. I was woken at 1 something this morning to crying (Kayden) and yelling (robert)- because we all know that yelling at a crying baby is going to make them stop ! I get down stairs to find him trying to put a bottle in her crying mouth that she is not at all interested in. I pick her up and hold her and withing minutes she is back asleep on me ! I am not sure why I didnt think about the yelling thing- since that is going to make them stop crying- ya right ! Well, I dont remember if it was Jekyl or Hyde but he was in my home this morning in the form of my husband ! " I was up all night with her" he said. Really ??? I have no idea what that is like ! He informs me "that's fine, I'll just sleep all day". Are you kidding me ???? I get a 2 hour nap and do everything I had to do and you are going to sleep all day and do nothing ????? I understand..... you are a man ....... and I........ am a superhero !!!

Roly Poly

According to daycare- Kayden is now rolling front to back and then back to front ! We have yet to see it but we are so excited ! Daycare says that she has done so much the past couple of weeks tht she can see a huge improvment !!!!

Our busy life

So yesterday Kaydens day care went on a field trip- yes, I said field trip...lol They went to aquarina springs. Can Caitlin was invited to go too ! There were 3 adults and 11 kids from babies all the way to 4th grade. Lisa and Nathan came over last night and we put them side by side on the play mat.It was cute when they actually accidentally grabbed each others hands. of course in typical kid behavior - they stopped by the time I got the camera ready ! But they were really cute together and to hear then respond to each other talking. I told Kayden to be nice and not abuse him- she may need him as a back up date form prom later in life !

We got a letter in the mail that we were discharged from ECI. What !!! So I called them to find out what is going on. Anyway I explained that we were not very impressed by our ECI person- she was very nice but young and new. she would ask me"what can I do for you" my response... "I dont know- you tell me what can you do for me" How am I to know what the program has to offer if you dont tell me. Anywhy it looks like we are getting a new "experienced" person and we will see about working with thier PT on assistive therepy- ie the bodysuit I want that cost an arm and a leg ! The new person will be out next week to meet us.

One more day !!!! Yes- we have been having a count down for the past 6 weeks about when Caitlin can change her earrings ! What I didnt share was at one point Caitlin came to me and asked about her earring. I looked and there was nothing in the front of her ear. My 1st thought was the earring broke and what was I going to do to keep the post in before I could get another "starter" earring. But the earring was actually embedded in her ear ! YIKES ! I pushed it out and then Robert saw on the paperwork that if that happens go to your doctor ! So we went and he said he thinks it will be okay but put neosporn on it at night and he put her on an antibiotic to stop anything before it happens. So it is a BIG deal that we survived the 6 weeks and she gets to change out her earring ! Keep your fingers crossed it goes okay !

Now if you are sitting down- Teresa is starting to apply for scholarships. Lets see if it happens cause last night she wrote the essay and never submitted it ! This time she is more concerned with surfing the net looking for them then actually appling but we will see.

Robert took Kayden to the Doctor today for her weight check and to see if the pnuemonia was gone out of her chest- drove all the way out there to discover her appt was next week- opps ~ smile

We are still in the middle of the washer sage but I will have to get into that at another time.

Anyone know where to get a money tree ?

If all the medical bills from Kayden's surgery and Dr visits werent enough........
She has OT twice a week and it really seems to be paying off- she is rolling over and reaching for things ! Is it the therapy, the fact that she is over the surgery, or growing up ? Who knows but why mess with it. Well the OT is $30 co-pay each time which is $60 a week and now they are talking about adding PT so that would be $90 a week. Yes, I know we can go with ECI and get it for free but I REALLY like our therapist so I dont want to change.
then I keep finding things that will help.....and they never seem cheap ! We got her the Child rite chair- which is like the bumbo but for special needs kids- it helps her build her trunk muscles and it allows her to sit and look around without flopping. Even though it is made by Bumbo- it is ALOT more thaan the Bumbo$37 price tag ! How bout $200 !! Now I found out about a body suit that helps with their trunk muscles as well. We met someone whos daughter has one and she swares by it and said she wished you would have had it sooner ! Would you believe $150 !!
But how do you put a price tag on your childs chance at developing ? How can I say that I am doing everything I can to help my child ? Do I want to think that there was something else out there and I didnt do it ?
So, if you hear about any money trees out there- let me know. I have a great place in the backyard to put it where it will get lots of sun and water and even have some friends (a peach tree and an orange tree) and we promise to love it and take very good care of it ! And we will definitly use it for a very good cause !

So much to share !

Where to start... Thursday I get home and Robert informs me that Kayden had her best day ever with OT and she has a new trick that Kristi (daycare) showed her. She is now rolling over.Of course I put her down and watch her and nothing happens ! We went to Teresa's band concert and after tried again.Low and behold she is now flopping over to her back ! YEAH Kayden !!!!!! You can see such a improvment lately. I am not sure if it now that she had her surgery and is getting stronger or is she just getting older ! Either way- it's happening, better late than never: ) Even a friend whos daughter go to the same daycare noticed the difference in her (and since he is a guy- it has to be noticable )

After seeing Jude in his, we got a child rite chair. It is kinda like a bumbo but better for special needs children. It allows her to actually sit up - rather than be propped and be "floppy". It also helps her to build her trunk muscles since she is sitting up and having to use them. We had her in it last night and it was so neat to get to see her sitting and being able to look around the room. Robert even positioned the chair so she could watch tv ! (a bad habit in our house..lol)

Our great dentist office and a wonderful hygentist named Kerri (hopefully that is her spelling). Anyway, Kerri had been trying to get us to allow her to have a fundraiser to help with Kayden's medical bills. We had been hesitant because of our pride and not wanting to ask for money- afterall, there are so many worse off than us ! But then the bills came in and we were floored ($154,00 for the hospital bill alone). Well Kerri asked again the last time I was at the dentist office and I kinda agreed. What I didnt know what the guy waiting to have his teeth cleaned organizes fund raisers. Kerri took him back to clean his teeth and the next thing I know she comes to me and tells me that he is doing a fundraiser and they have not yet selected the benficieries and he wants me to email him our story. Then she comes to me and wants me to meet him, he tells me they like cops and kids and that the committee meets next week and he will take Kayden's story. SO I email me him the story and a pic of her the day of her surgery. Talk about being in the right place and the right time. About a week later he emails me back and says we have been picked with another organization to be the beneficieries of the event. It is hosted by the Rotery club, optimist, Lions etc and it is a Vegas Night ! Tickets are $40 and include a BBQ dinner and drinks (beer and wine) a raffle ticket and $5,000 in casio chips ! It is being held June 13 and last year they even sold out ! We are pretty excited and are looking forward to it. If you live in the austin area and want to go, let me know !! Or if you know anyone who would like to be a sponsor. It is just like Vegas- the more you spend the more you get in return. We met with the guy this weekend and is seems really excited too.

Oh, and if you were keeping up with the washer saga- when they called my house the machine picked up and then I grabbed it and no one was there so they marked me as unable to be reached. even though I called him right back and left him 3 messages on his cell and I had called 30 minutes before to make sure we didnt get forgotten ! anyway Sears got to be the other end of my break down as I cried on the phone to them for an hour trying to get them back out ! I didnt succeed and saturday was full so they are supose to come today ! I was told I qualify for the rental reimbursment which means if I go out and rent ione and pay for it then they will give me the money back !! Cause that is so easy to pick up and washer and it fits in my back seat right next to the car seat !!!HELLO ! it makes more sense to get the guy to come back out ! whatever- just pray for me that I am destin to spend my evening washing clothes !!!

Being a step parent is hard !

Being a step parent is hard. If you have ever been one you know exactly what I am talking about. First you have the whole ex-wife issue ! Then you have the early resentment becuase every child wants there parents to be together- no one wants to have thier parents divorced. Then there is the whole "step parent" title that Disney has done a great job of making evil ! Snow White, Cinderella to name a few....

I have had my issues with Teresa and I have been accused of being the evil step parent- even though I am the one that goes out of my way and have gone far beyond what her mother has done for her. I have often been sad that I don't get much "reward" out of the relatiuonship or for everything I have doen for her- meaning she likes to argue and critize me. I have been told that is a teenager for you but I felt that I deserved more since I was not her mom and raised her because I wanted to and not because I had to. I felt that she should appreciate me because she knows what kind of mom she has and how much more I do for her.

Well today I was sitting at my computer and I get an email from her ........
"i know this is random but i just wanted to say thank you for all you do for me and sorry for all ways giving you crap/ drama to deal "

Not sure what got in to her ! but I am not about to complain !!! So I respond...
"you bout made me cry !"

Teresa: "i didnt mean to make you cry...crying is typically not a good thing
Me : "it was this time : ) "
Teresa: "oh okay... did you show it to all you work friends?"
My thoughts is there a motive here ??????? starting to ruin the warm fuzzy feeling......
Me: "ummm- no, am I suppose to ????? is that why you said it ?
Teresa"no normally parents show off when their kids are good.. idk why i said it"

Little does she know that instead of showing it, I am posting it on my blog !!!

I got my reward !!!!!!!!! ~ smile

Love that smile

So Last night I attended a meeting about advocating for your child in the school system. there was no reason for me to go all the way home and then come back downtown, so Robert picked up Kayden and arranged a ride home for Caitlin for gymnastics (thanks Kelly !) and Teresa watched the girls- since Robert was working.

It was really nice to have a night where I didnt have to rush home, and I casually went and grabbed a bite to eat with a coworker before the meeting. Toward the end I got a text from Rob- saying everything at home going well and enjoy my meeting. Awww how sweet. So at the end I called him to say I was on the way home and heard about how the kids were fighting over corn dogs and Teresa was complaing that the baby was a monster and she needed to get in the shower- aka welcome home mom !

Once I got home, I found Kayden asleep in her swing and Teresa was on her way to a shower. Caitlin had already had one and informed me "I have to give Teresa a compliment" she told me how she banged her knee on the stairs and her sister carried her and got her ice ! - I guess the corn dog fight was over. So I got ready for bed and finished dealing with the big girls and went down to get Kayden to put her in bed for the night.I gently picked her up and the eyes opened- crap ! I hope she didnt think that was a nap and she was planning on waking up ! So I patted her bottom and watched her looking around. Next thing I know our eyes met- she realized it was mommy holding her and her whole face lit up with a huge smile !! AWWW my heart melted cause she knew her mommy was holding her. I patted her more and got her back to sleep. What a wonderful ending !

I told Robert the story and he said she does the same thing to her and once she smiles he wants to play with her. So the truth comes out !!!! All those time she says she wakes up is really him playing with her after she smiles at him. I wanted to get mad for him ruining my routine I had her in but after seeing her smile at me, who can blame him ! But he is not doing it anymore ! I dont want to create bad habits !

On the subject of Robert- he called me this morning to tell me all the critters have been dropped off.... the bird and the bugs !!!! but this morning there was a new one.....t-bird (Teresa's nick name when she was little), tooterbug (Caitlin), Kaydebug (Kayden), and Molly fish ! Molly fish I ask ??? Molly is our neighbor and Teresa's friend that we car pool with sometimes. Yes, he replied- a Molly is a fish ! LOL (get it ???)

What is normal ?

Just whenI thought things were getting back to normal..... I have learned that normal for us means chaos !

We are back in war ! Kayden has been on an antibiotic for the pnumonia and it is giving her less than desired bowel movements ! Out the diaper, on her clothes, our clothes, the blankets, the swing, the furniture..... you get the picture ! All I can say is YUCK !!! to make matters worse I cant wash anything she gets poop on... why.......

After a HUGe ordeal ! Sears showed up on Saturday to install the pedistals for my new washer and dryer (that I am not too sure I like). It seems as though they messed up the washer in the proccess. I threw in a load of towels and then when it got to the rinse cycle it sounded like a battle was being fought in the laundry room ( and I dont mean a poop war) there was loud clanking and clattering ! We think they got the drum out of whack so Robert called to see when somone can get out there to look at it. the answer ...friday ! So yeah, I dont have to wash clothes for a week but we told the kids to put their underwear inside out and rewear it (JUST JOKING ) actually teresa called the nieghbor and asked her to wash a pair of her work pants that we dirty.

Always something.... and right now we are going on little sleep. Miss Kayden got up at 4 this morning and both robert and I had gone to bed late ! I couldnt fall asleep and he had to wait to pick up teresa from Dairy Queen ! And teresa is ccranky cause she had to work late and has school today and work again tonight! Welcome to the real world !

Almost normal...

Okay I dont want to speak too soon but I think things are getting somewhat normal.Whatever normal actually means. Of course now that I said it I have probably jinxed myself !

I havent blogged in a while- I can come up with 100 excuses why but who knows if any of them a the real reason....

So lets do some updates....
Caitlin is now sleeping in her own bed !!! YEAH !! this is such a big deal. I was hospitalized in 2007 and after that she would not leave my side. Even to sleep on the floor in my room. This week she has slept in her room 3 times all night and once she feel asleep in her room and then put her self in her room when she woke in the middle of the night ! A few more night of this and the pallet on the floor in my room is folded up ! lol I think it is because she really wants to sleep at a friends house and I say no until she can sleep on her own (otherwise she calls us int he middle of the night to come get her)

Teresa is passing everything and alomost has all a's and b's. YEAH ! we even ordered graduation cap and gown. Knock on wood it looks like it is going to happen ! Keep your fingers crossed !

Kayden is doing GREAT !!!! the heart doctor has cleared her saying he will see her in a year. Of course my reactions was "do I need to remind you she just had open heart surgery ???" We did end up back at the hospital on thursday last week with pnumonia and she was there for 4 days ! But she is back to her bubbly self and (please dont let me jinx this) she is sleeping through the night !!!

LAst month we were chair shopping and I said if we are this close to the mall I want an Orange Julius (they now have one in our mall- something I hadnt had in 10 years), then mini me (I mean Caitlin) says "if we are at the mall I want to go to build a bear" so we do. For those of you who dont know, we call Kayden - "Kaydebug ludybug" well build a bear had a costume that was a ladybug (wings and all) so I took it and held it up to Kayden who was sith daddy ont he bench outside the store. Some girl walked by and asked "are you going to put her in that" I said maybe and she said "if you do, bring her next door to picture people and I will take her picture and give you a free 10x13" (jumping ahead.... free actually meant "let me con you in here and take all your money") so we got the outfit and had her pics taken... here are some of my favorites.....

to be added later- computer issues - (update) the link never showed to add them so I was able to add them to the side.... look to the right...lol

while we were waiting for the pics... Daddy talks Caitlin into getting her ears pierced ! And she did it !!!! We are NEVER this spontanius. lol

We laughed so hard !

We laughed so hard ! I had to share.....
Robert and I were talking about the couple in Calif. who just gave birth to 8 babies ! (yes 8, if you have not already heard this). Robert asked "how exactly did that happen, did an egg split?" no sooner than the words came out and before I ever got the chance to say anything.... then voice answered with "there are no eggs, we are mammals and we have live babies". We laughed so hard ! thanks caitlin for that science lesson !

Is today Monday ?

Is today monday ? It sure feels like it ! This morning Robert went to an extra assignment and dropped caitlin off on his way. Teresa was to find her own ride to school but was having trouble getting hold of anyone. I made Kayden her bottle and when I went to pick her up out of her swing..... I grabbed the blanket that was on top of her and flung poop on me and the carpet. I looked down to discover she had another blowout and it went out the sides of the diaper and filled the swing ! It took 2 of us to try and clean it up. dont want to go into all the details but it was everywhere and a real crappy way to start the day. I threw the swing cover and soem of her clothes in the washer and then offered to ake teresa to school. before we left, robert called to say he locked his keys in the car and needed me to bring him his spare. That was a far trip and it meant I had to feed kayden first. so teresa fed her real quick before we left and I picked up the living room. Needless to say I was worn out and it wasnt even 8 am !!!

Yesterday I picked up teresa from school (still in my pjs) and decided since I was out to grab something from the store. ran in and only got 5 items (that is a shocker, cant remember when I ever left the store with only 5 things). Went to get in the car to find a note on my car. Someone hit my car ! at least they left a note ! we tried calling it last night and this morning but no one answered. I did a reverse search ont he number and got an address. so when Robert went to pick up Caitlin today to went by the house. He talked to someone there and now we have to get an estimate !

The hospital had OT come work with Kayden to make sure she was sucking okay. They refered us to a home heath place to continue the OT. The lady came out today to work with Kayden and evaluate her. She worked with her on rolling over, hold up her head, reaching for things. With her being so weak from her heart she is behind on these things. She is coming again next week. What I really like is she even said on days when robert and I are both working, she can visit Kayden at daycare !

I am also up to my nose in cookies. Caitlin is selling girl scout cookies. She wanted to work a booth but there is no way I can do abooth with Kayden. One of our neighbors was nice enough to take her around the neighborhood selling cookies. I really appreciate it ! She has sold 120 and her goal is 180- 60 more to go (we actually got 190). Cookie anyone ??????? Oh and if you want to help and dont actually want the cookies. You can pay for one tha is sent overseas to the troops ! Operation cookie !

The Poop War

Well we have truly been fighting the poop war ! Each battle has given the different sides wins and sometimes it is a draw ! Yesterday I lost a big one ! I was feeding Kayden and heard her poop, I said let finish this bottle and then we will change you. As soon as I moved the "burpie" I looked down to discover this battle was won by the poop by a landside. It had blown out the leg and was all over me and the blanket ! I was home alone and couldnt do much but lay her (with the pooped covered blanket) on the tile floor while I atempted to clean us all ! Today was a draw- I was slightly prepared and had put her in plastic bloomers. As we sat in the drs office I heard it and panic faced told the girl I needed somewhere to change her fast ! We then ran down the hall only to discover we couldnt save the bloomers but the outfit survived, calling that battle a tie. Althought I think the records is ...Poop 10 , Us 2. but who is really counting ????

We went to the heart Dr today for the follow up. He did a EKG, echo, and chest xray. The Doctor said it looks great and that there is just a little leak- but was very happy with the surgery ! He found some fluid outside the heart that could be the cause for Kaydens fussiness, moaning, and low grade fever (was 100 at the Dr ofc). He even had a name for it..peri.. something. He said it could be the sack around he heart is inflamed and that is what is causeing the fluid. He said it happens and that the symtoms are what she has. He is putting her on Motrin 4 times a day. but that still does not exlain the pooping. He wants to see her again next week.

And her sterile strips are falling off. I can not believe how thin the cut is.

She is home

Sorry I havent updated- things have been so crazy ! Kayden came home on Friday. We were concerned because she didnt seem to be acting like herself and really wanted her to stay one more night. but we didnt win that battle. She seems to be really fussy and moaning, crying that sounds like a baby dinosaur. Not her usual happy self. Robert had her friday night and I go her first thing saturday. Well, Rob only got to sleep for a couple of hours before I woke him. Kayden had her first blow out and it was everywhere ! He took her in the shower with him and cleaned it up. Little did we know that wouldnt be the only one and she seemed to have one every few hours ! Concerned we called the heart doctor (doesnt everyone call a heart doctor when their baby is pooping?). He said we could try and feed through it or take her to the hospital for an IV so she would not get dehidrated. They seemed to taper off on sunday and monday but she had a dooser on monday ! Without being graphic let me just say it was everywhere. Cailin commented that the surgery has changed her. Her personality is just not her. She still refuses to smile for Robert. She also seems pretty flushed. She has two holes just under her incision that the drainage tubes were in. they dont close them up so they can heal from the inside out. totally gross and I have to change the band aid daily. I was concerned that maybe one of them got infected, but Robert downt think so. she is still fussy today. I am having problems putting her down. So I have to keep this short.

Yesterday, my friend melissa picked up Caitlin and took her to the movie "Hotel for dogs" then too her back to her house and play. they made a menu and went grocery shopping and showed up with lasgna, garlic bread, and cupcakes. Caitlin had a great time and said it was her best day ever !

must be something in the air

I have notice that other people whos blogs I follow are also going through the pity parties and the winter blahs - so it may not just be me- what a relief :)

I am trying to stay positive like a new begining. I have someone here today to clean the house- I wanted it to be a very clean environment when Kayden comes home. Not that I can really afford it but how do I not afford to keep my daughter area clean for her own health. They are even on a ladder cleaning the blinds- something I am embarrassed to say I dont do !

Maybe it was Kayden smiling yesterday or maybe it was the B-12 my sister talked us into taking to help with stress or maybe it is just me not going to work.lol

So staying positive I want to say some thank yous- Thank you to my little sister who stopped her life and flew here to help us when Kayden had her surgery ! Thank you to my friend Jill who came to the hospital and sat with us during the surgery. Thank you to Melissa who came to visit and has offered to take Caitlin to a movie. Thank you to Krisit who takes such good care of Kayden and got her the autograph bear with all the well wishes. Thank you to everyone who has come to visit and those who have called. Thank you for all those who offered for meals, which I am sure we will need once we get her home. Thank you to everyone who has called and check on us and have offered us words of encouragement through this blog (I love the comments). thank you to all the moms who have been through this before who have helped me go through it. Thank you to Jenn O. for your streagth which has become contagious. Thank you to child life for helping Caitlin and thank you to the wonderful nursing staff for taking care of Kayden. And thank you to everyone who has realized that this has been a very hard and stressful time and has allowed me to gripe when needed, who have offered shoulders to lean on, give us the support we needed and sometimes taken us with a grain of salt when we have those bad monents we are all allowed to have once in a while~ we truely appreciate it more we can express.

Robert is at the hosptial now. she had some vomiting last night. And have done a chest xray and EKG/echo and are waiting for the doctors now. I am still hoping she comes home tomorrow but she could even come home today !

I got a smile !!!

Today was Kayden's first smile after the surgery ! She smiled at 9:35 after her feeding and has smiled several times since ! But poor daddy, mommy has gotten several smiles but daddy hasnt gotten one : (

Also, I just found out that while things are going good for us- the little boy who was in the room next door in PICU died last night at 8:30 when they "pulled the plug" Makes you appreciate your child even more, regardless of their issues !!!

We're back

Disclaimer- ignore my spelling...lol

We are back. I havent blog in a while cause I was in a mood, we can just say i was having a pity party myself. I am not sure if it is because of everything we are going through or my sleep being off or the stress. I was letting little things bother me and I am sure making bigger deals out of things then i should. It started monday when I took Lori to the airport and had to get up at the crack of dawn ! I went into work for a little big cause the unit closes from 6:30-8 and got a email from my supervisor that i allowed to upset me ! I hate when people assume things without asking first. And one of my BIGGEST peeves is co-works whyo are co-workers getting in your business. We are not friends we only work together, You could not give a crap about me unitl you hear through the grapevine that something has happened and now you think we are best friends ! We are not. I did not share anything with you cause I dont want to discuss it with you ! So dont ask me like you know everything and dont go behind my back and ask my friends !! My friends should not be put in a position to have to answer any questions about how my child is. And if you have to ask other people then you are obviously not my friend !!! Cause my friends know. Okay.... getting off my soap box now but you can tell why it was not a good idea for me to post before now...lol... this is me calm...lol

Now on to Kayden....
Day 4
They took the 2 drainage tubes out and the pacemaker wires !! HUGE step in the right direction. AT 12:45 they removed her breathing tube but she didnt do well and they had to put a new one in, this time in her mouth ! Her throat is swollen and she was having problems breathing so they have her on steroids to tey and get her swelling down.
Robert noticed that her eyes were really shaking- "he keeps saying like a really bad drunk" how obviously is it that he is a police officer. They think it could be coming off the hard pain killers so they are going to try and give her a little more to see if that stops it. It didnt work so they are watching it. They are starting to allow her to nipple. She took 1 oz of pedilite. Step in the right direction.

Day 5
The cathader came out this morning and so did her art line (IV). They want her to eat 75ml or put the difference through the NG tube in her nose. at 2:05 she started eating through a bottle and did very well, the next feeding not so well. and so on, her throat is really swollen so through the night her feeds with be by tube to allow her to thraot to heal. they eye shaking has redeced but now her eyes seem to cross. Possibly all due to weak eye muscles caused by the meds.

Day 6 (wed)
Had a heart attach when I showed up at the hosptial today. Walked into her room and it sounded like she was gasping for air ! her air way is swelling and she is having trouble breathing. They put her on steroids to help reduce the swelling. She hasnt slept much yesterday or last night. she got a breathing treatment and then they put her on a humidifier that she wears a breathing mask for and she finally fell asleep !!! She slept for several hours. She is eating again this afternoon and is improving alot !!!

Day 7 (thursday)
OT came this morning to help with her feedings and she did great. the Doctors came to see her and are pulling out the feeding tube and the last IV. they are going to see how she does breathing today and are saying she could go home tomorrow or saterday

Things I forgot

1. Caitlin was asking when Kayden could eat again and we were explaining she was eating.

"Through a tube she asked" (being use to the NG tube Kayden was on)

through an IV we explained

"Oh ya" she replied "bananas"

bananas we questions, then we realized what she was talking about. Kayden was lossing potassium so they were giving her some through one of the ivs ! So I guess she is getting bananas through the IV..lol

2. We bougth containers and Caitlin decorated them with heart stickers. We are filling them with cookies and giving them to the people who have helped through this ordeal ! I spent most of the morning making cookies. Only to discover the dough for the 4 sheets of choc choc chunk were freezer burned. Then we made peanut butter but they werent very sweet so we melted choc for the top. then we made another batch of PB cookies and added sugar, but when I thought I was resetting the timer, I actually turned it off- so some of those burned ! I was sucessful with the oatmeal raison- figures huh !?!?! and one batch of choc chunk. Will try to do sugar cookies tonight so we can pass them out tomorrow.

3. My sister goes home tomorrow. It has been nice having her here. She is currently sleeping in the waiting room (she was out late last night). I have been using but the hospital has a library with computer access so I will still be able to update : )