Life of Bean

I am a HORRIBLE blogger

2009-01-24T20:33:00.000-08:00

This is probably because I have class everyday except Friday, Hailey has therapy everyday except Wednesdays and Friday's and I work Wednesday, Thursday and Friday. I have a test in anatomy every Thursday and homework in that class every Tuesday. I am a little busy lately.

Hailey is learning to walk now, which I'm VERY happy about. She finally started crawling on all fours about 3 months ago maybe. Her PT is getting her some orthodicts (sp) and hopefully that will help her a lot. She still refuses to feed herself but one thing at a time right? She has learned the sign for baby and does it every time someone says "Aww" "love" or "baby". She hugs her dolls now too, which makes me happy, because she is showing that she understands some abstract concepts. My baby is so smart, I just wish everyone could see this about all people with DS.

I got an award :D

2008-11-23T18:08:00.001-08:00

It makes me happy :D. Thanks JRS over at http://rejenerations.blogspot.com/

I've been busy working and being with Tre since he took some vacation time. It's been nice having him back lol. I still haven't got any Christmas shopping done, and I'm trying to look into HUD housing, but I feel a pain in the butt coming on sometime soon with that. At 9pm tonight I have to call my former employer to get paycheck stubs that SS want's or Hailey's SSI checks stop, which we CANNOT afford.

Money sucks when you don't have any. I guess that's why I'm going to school right?

I don't know what else to say, i guess I'm a little down right now :/

Fall Festival

2008-10-30T18:01:00.000-07:00

Hailey's developmental therapist invited me and Hailey to the fall festival at her chruch tonight. We went, but it was soooo cold we didn't stay long, but Hailey played on the swings and slides and she didn't really like them, they scared her I think. But it was nice being invited somewhere, it get's sooo lonely being cooped up in the house with the baby sometimes. I mean I love being with her, but all stay at home mom's know what I mean.

Tommrow I'm going to take her trick or treating with her grandma and aunt. It should be fun, hopefully not too cold.

<3>

Haileys first months picture post

2008-10-26T18:29:00.000-07:00

This is Hailey in the NICU a day after she was born. This was a few hours before her surgery. She was soooo tiny and swollen. She wouldn't take the paci *gee i wonder why, couldn't be the og tube could it?* That hat was SOOO huge on her that it went past her eyes. No one knew that she had DS yet.

Here she is about a week after her surgery. The nurses had just given her a bath *I was WAYYYY to scared to* so that explains her monkey hair lol. There are socks on her hands because she hated the oxgen and og tubes. The og tube was full of dried blood and gross biley type stuff.

She's been a grandma's girl right from the start! ST wanted us to try the pacis as often as possible. She HATED them.

Her face was so tiny that all the tape and bandaids could hardly fit. She was a tapey mess all the time.

Daddy was scared to hold her because of all the tubes. But when he finally did he wouldn't put her down. It was the most heartwarming thing in my entire life.

Those newborn diapers were SOOO big on her. It was sad/funny. The only way to calm her down was to hold her hands and hum to her. We did that often.

WE'RE HOME!!! That boppy pillow was a life saver for her. It helped her ALOT with head control.

That's where she slept, ate, and played for quite a while. Grandma didn't want her to get cold so she bundled her up *It was only September btw*

Can we say JAUNDICE? lol We couldn't tell if she had it or if she was just colored like her daddy. Needless to say, she had it.

She LOVED her hippo gym/tummy time mat.

Halloween last year. She HATED her costume, but we went to Burger King because one of my friends dressed up AS the Burger King and she fell asleep and forgot all about it!

That's all the pics i have on this computer. I need to get her birthday pix uploaded soon.

Bye <3

Ignorance at it's finest

2008-10-19T21:23:00.001-07:00

I just got smacked in the face with a big ole dose of ignorance.

Down Syndrome Victims?!?! I HIGHLY doubt this person EVER met anyone with DS.

http://ruleofreason.blogspot.com/2008/09/palins-down-syndrome-child-and-right-to.htm

Elmo sigh

2008-10-19T21:02:00.000-07:00

I told myself that if I ever had a child, they would NOT be obsessed with Elmo like almost every other child on earth. Hahaha I laugh to myself these days. Daddy got Hailey an Elmo that giggles when you move his head. I ~~hate~~ love it so much. Well Hailey loves it soOoOo much. We've already been through one, and her birthday was only in August. I got her an Elmo/Cookie Monster ball the other day, and Grandma got her an Elmo pull along ball. And I got her an Elmo chair that giggles and shakes. She doesn't like the giggling, she looks around and her eyes get wide. But she sits in that chair like a big girl now! Today I sat her down in the chair so I could get something to drink and she said there, held onto the arm rests and watched football.

That child adores football. When I get around to it, I'm going to post Hailey's birthday pictures and some others of her. I'm just lazy and depressed at the moment. My life isn't going exactly as I hoped it would, but that happens to the best of us, it's just that I can't get over it.

Ho hum.

Halloween, Christmas, no money oh my!

2008-10-17T16:28:00.001-07:00

I still have to get Hailey's costume, and Tre's (Hailey's daddy/my bf) little sisters present for her birthday annnnndd start Christmas shopping. It's going to be soooo fun with the $94 checks i get every 2 weeks (pouts). I still also have to buy diapers/food/gas/insurance/meds/wipes etc. If Hailey didn't get SSI I would be ruined. I still have to check out her daycare situation and my school situation which is looking better since it's only going to be $7295, and I'm going to try to get grants if I can and apply for scholarships. If anyone knows anything about financial aid, let me know.

Tre won't be home for Halloween, but he's working so it's OK. We really need to move out so we can be a "real" family and he can interact with Hailey on a daily basis and see who she actually is. We just don't have enough money right now. I have medical bills I have to pay (only about $300 but still) his car broke down, I have a crappy job, and I don't want to move out with a loan out. I don't know people deal with it, but they are amazing. I can't get a job because I don't know my school schedule and I would never see Hailey really. I only work 3 days a week and Hailey has therapy every day but Wednesday.

I want me or some family member to be with her when she has her therapy, but that's not possible. How do you guys deal with not being with your child during therapy's if your child is in daycare/school? I just don't want to miss something or do something wrong and mess up all her progress.

She's getting her hearing tested soon, and hopefully that will help with her ST. I don't know if she just doesn't pay attention or she doesn't hear well so I wanted it tested. And she's having tear duct surgery in Feb. I'm scared about her being put under again, but I'm sure she'll be fine. It's only going to be an hour surgery, which is ALOT shorter than her first one, but still, they're cutting on my baby. It's horrible, but it's going to help her so its OK.

I'm going to take a nap before work, I'm exhausted since Bean woke up at 2am.

First Buddy Walk

2008-10-12T19:32:00.000-07:00

Saturday was Hailey bean's first Buddy Walk. It was really amazing to see how "normal" all those people with Down Syndrome were. I was apprehensive about going because I didn't know if I would just be crushed to see the reality of it or what. But I wasn't. If anything it gave me hope. Girls and boys running and jumping and playing and getting in trouble just like their brothers and sisters. I was exetremly excited to see how close everyone was and I know that Hailey will never be alone in her struggles.

During the walk people kept thinking that her grandma was mommy, because shes 43, and I'm only 20. People were shocked to find out that I'm her mom. That's another really difficult thing to deal with. I can't relate to most of the parents. They all have other children, some children close to my age. I only got out of high school a year ago and some of them are high school teachers. I would LOVE to be more active in the DS community around here, but it's just so awkward...I don't know, maybe it's just me?

Anyway I'm a terrible blogger but nothing much happens around here...EXCEPT that Bean is getting a tooth...IN THE FRONT. So that's 3 teefers now. 2 incisors and one in front. Whoohoo now she can eat "real people food" as I called it the other day. I ment "big people food" but it didn't come out that way.

I might go to bed, I might look at more blogs, who knows?!

*BE MY BLOG FRIEND plz?*

Who knew?

2008-09-18T16:53:00.000-07:00

I had NO IDEA that Hailey knew how to stand up in her crib, or that she knew how to pull herself up on her grandma's bed and ALMOST put her in hand in the fan, or that she knew how to unplug things, or how to turn on and off the night light. This just proves that just because she has DS doesn't mean she can't do things, she does but she just does them when she thinks no one is looking!

Hailey Bean is a handful lately, but I love it. Today was her first day in her "big girl" carseat, and she LOVED it. She can sit upright and see everything, and yesterday was her first day acutally sitting in a shopping cart, not just in her carseat in the shopping cart. She's getting soooo big and she can almost crawl on her hands and knees now, but she still belly crawls most of the time. It's almost Bean's bedtime, she's going to go watch Reba with grandma and I'm going to play WoW until I have to go to work.

Dang

2008-09-17T18:09:00.000-07:00

Hailey has learned how to throw fits?!?! When did this happen? Tonight my step mom came in after work and she didn't pick Hailey up right away, so Hailey threw her self back against her walker and screamed. She also whines now?! And kicks the bed/ground/person if she doesn't want to be there. Ah crap! This isn't supposed to happen. She's only a year old!!!

The good news? I put all my music on my Zune tonight so I acutally have something to listen to at work! (I have to be there in 30 mins)

Night!

I lied

2008-09-12T22:56:00.000-07:00

This is to remind everyone that as long as there is Down syndrome there will be SOME hope for this world. Look at that smile just know that our kids are AMAZING, red cheeks and all!

A little about Hailey (acutally ALOT)

2008-09-12T22:28:00.001-07:00

What to say about Hailey? Gah, I don't know, except that she's wonderful! She was born on August 6, 2007 and the only way my father remembers her birthday is from that song 867-5309 since her birthday is 8-6-07, funny huh?

Anyway, soon after I found out I was pregnant I went to the doctor to have a routine ultrasound. Everything looked wonderful said the tech. But of course 3 days later I get a call from the hospital saying that there looks to be something wrong with my baby's heart, and also her left foot. I panic because they didn't say anything else, they just left me with baby-heart problems-18 years old-still in high school-OH MY GOD. I was sent to a maternal fetal medicine specialist who did extensive ultrasounds and said that what they saw on Hailey's heart was called an echogenic focus (an "echo" of light from the back of the heart) and that this along with the abnormal toeing of the feet were soft markers for Down syndrome. I brushed it off, because hey I'm only 18 and babies with Down syndrome are only born to old ladies (LIE).

The specialist wanted me to come back for some more ultrasounds for a nuchal fold test. During this ultrasound, they discovered that Hailey most likely had a condition called duodenal atreisa (narrowing of the lower intestine) and this ALSO mainly occurred in fetuses with DS. They couldn't confirm the DA even though I had lvl 2 U/S every week until I had Hailey. I was soon put on bed rest due to low fluid levels, and the low fluid levels conflicted with the DA diagnosis because usually with DA you have EXTRA fluid. ( OH, I wonder why I had low fluid levels, they only had me walk around the NICU of Riley Hospital and the birthing suites of IU). The last doctor who did my U/S was trying to force me in to getting an amnio and gave me late term abortion brochures just in case she did have DS. I repeatedly told her NO for the amnio, that I didn't care if my child did have DS I was going to give her a fair chance to prove herself and to prove that doctor wrong!

I was scheduled to be induced on August 13th 2007 at IU Hospital so I could be closer to Riley Hospital (they are connected) just in case Hailey had serious heart problems. Well that didn't happen because my little bean had a different schedule. I had labor pains for a couple of hours, but I really just thought I had to poop LOL! At around 3am I called my step mom (I was at my boyfriends house at the time) to come pick me up and take me to the hospital. I didn't want to wake my bf up just in case it was false, because he had to work at 9am. I got there and they checked me and said I was.....8 CM dilated. As soon as I stood up to put my pants back on my water broke (all in my shoes too!) and my step mom called my bf and told him to hurry that he was going to be a daddy soon.

I was pushed for about half an hour and out popped the bebe! They rushed her off to a corner of the room where about 5 doctors checked her out. Finally they let me hold her while I was being stitched up (10 stitches!) After the awesome 10 mins of holding her they whisked her off to get X-rays of her heart and belly. After about an hour the doctors came back and said they didn't' know anything, that they were sending her to Riley for further testing. I wasn't allowed to go because I was bleeding too much but my bf and step mom went down there with her and I came about an hour later. At Riley they told me that she DID have duodenal atreisa and it would need to be repaired ASAP. The surgery was scheduled for the next day.

The next day the surgery happened and she pulled through like a trooper and the surgeon told met that the reason they couldn't get a clear DX of the DA was because her intestines were backwards. How the hell did that happen? They also did a biopsy for Hirchsprungs and a blood test for the DS. 4 days later the results came back. Positive for DS but negative for Hirchspurngs. A month later Hailey was released from the hospital with only a feeding tube which she only had for about a month and a half.

Today she eats like a little hog, can sit up by her self, finger feeds, babbles wonderfully, crawls, holds her own bottle and is trying to cruise! She is a little miracle and I love her more than I have ever loved anything ever.

I'm going to bed, since it's 2am...Jesus I love my days off!

First Post!

2008-09-11T14:19:00.000-07:00

Hey everyone in blog land. I figured I'd start this up because I read ALOT of the blogs of parents of DownSyn.com I want to help spread the word about Down syndrome and how AMAZING my little Bean is. I also need something to do because I don't have a day job anymore and I want some people to relate to.

Hope you enjoy reading about our crazy life!

-Samm