My Princess has Down Syndrome!!

HAPPY 7TH BIRTHDAY KATIE!

2009-06-18T09:33:00.002-04:00

I sit here and think about how much Katie has been through and how far she has come. Seven years ago today I gave birth to a beautiful little girl that was not expected to live. She went through so much her first three years of life and now she is a happy, pretty healthy 7 year old. If you would see her today you wouldn't believe all that she has over come. Katie is definitely a miracle child and I am glad that she is mine and wouldn't trade her for anything. Of course she is hard headed and does what she wants but that makes her who she is. I LOVE YOU PRINCESS, HAPPY BIRTHDAY!

Update on life!

2009-05-26T09:15:00.003-04:00

I haven't blogged for awhile and it's not because I don't have time, it's because I haven't had much to say. The kids are doing great and have been behaving so much better.

Katie started Stratterra for her ADHD and it is really helping. Of course it isn't a miracle pill that makes her listen but it has really helped her with sitting and not being so implosive. She has also started in a soccer program and cheerleading is starting again in a few weeks.

Her birthday is coming fast and I can't believe she is going to be 7. This year is the first year that she was invited to friends birthday parties and she really enjoyed all of the parties.

Also school is almost over and I can't believe that next year she will be in 2nd grade. Time has really flown by since she was born. It has been a very eventful 7 years but so worth it!

Sometime Doctors Just P*** Me Off!!

2009-03-27T13:16:00.002-04:00

So we went for Katie's testing with what was supposed to be a developmental pediatrician today. This was supposed to take all day. We went there and the Dr. comes out and ask if Katie would be ok in the waiting room by herself. Of coarse not. I told him that wasn't a good idea and that she would be fine in the office with us. He asked me a few questions about her history and family history. (note: Katie was being a brat). Then he gives me paper work and says he will take her into the room next to where I was and try to give her an IQ test. He was gone for a total or five minutes at the most and I could hear him the whole time. He comes back and says he doesn't have any testing that he can do for her. He says she needs tested on an infant level. I inform him that she might be on the infant scale for speech but nothing else. I also tell him that she is very intelligent and that people who don't know her don't understand that because she doesn't talk. I peeked into the room he was testing her in and all that was in there were some papers on the desk and a clock. What kind of testing does he think he is going to do with that. Anyway he confirmed that he thinks she has ADHD and should be on medication for it. I am going to have to think about this for awhile. I left there mad because he acted like my daughter was severely mentally R*******. Obviously he hasn't worked with Downs kids before and does not have patients. Well at least we are on a waiting list for another doctor to be tested.

Why I haven't been blogging

2009-03-05T09:42:00.002-05:00

I haven't blogged in a while so I thought I would let everyone know why. Well Brady has been quite the handful. He was going through a period of not behaving at all. It was hard to do the littlest thing like drop papers off at the doctors for Katie's evaluation this month. I spent so much time yelling and wanting to cry that I didn't take the time to realize why he was acting this way.

I have really been working with him and he is really improving with his behavior. I have cut 75% of his sugar out and have been talking to him instead of yelling. I think he was acting like this because for one he ate alot of things with sugar in them and too he wanted attention. He still acts up some but nothing like he was thank god.

Well on to Katie. She has been to two cheerleading competitions so far and has done a great job. She really seems to enjoy this and has made some new friends which is wonderful. We have a few more competitions before summer break and I can't wait.

She is going to a developmental pediatrician on March 27 for a 4 hour evaluation. We are doing this so that I can get someone else's opinion on where she is developmentally and to see if she has ADD.

School and Stuff

2009-02-09T13:46:00.002-05:00

So we had our meeting at Katie's school. We aren't getting a PCA but have come up with some ideas that I hope will help. We are going to give her breaks during work time and have come up with some fun ways to learn. We are going to work on colors and counting by painting her finger nails different colors (and yes they are going to do this in school) and also she is going to be rewarded with stickers and have a chart to put them on (this helps at home too). So we will just have to see how this goes and I have another meeting in a month.

On to a different subject. I have seen a difference in her behavior lately. When she went to her first cheer exhibition a couple of weeks ago she was like a different child and sat and watched for 3 1/2 hours. We also took the kids to Washington DC on Saturday and she was very well behaved and didn't through a fit about holding my hand.

Here is something a little funny about the visit to DC. We were walking in the zoo and a man stopped and put his foot up on a ledge to tie his shoe so Katie stopped put her foot up too and pretended to tie her shoe. It was so funny!!!

School

2009-01-30T09:56:00.002-05:00

Well we haven't had a meeting yet to discuss the PCA (personal care assistant). It seems that everyone that has to be there can't make it on the same day so we just have to wait a little bit. Good news is that Katie's teacher has removed the rifton chair from the room and they are just going to work on making her sit. She has her good days and bad. The problem lately is that she is throwing work materials when it is work time in the afternoon. I will let everyone know when we have the meeting how it goes.

Our First Cheer Exhibition!!

2009-01-25T18:52:00.005-05:00

Well today was our first cheer expedition and I was excited at how well it went. Katie was such an angel. Her team performed 4 times in 2 1/2 hours and she did great. Here are a few pictures.

Cheerleading

2009-01-19T16:24:00.003-05:00

Well we went to cheerleading yesterday and it went a lot better than last time. I am not saying that Katie didn't try to run off but she payed way more attention this time. She even learned part of the cheer. This Sunday she will be going to a cheer demonstration with her team at a mall in Harrisburg, PA. I am so excited and feel that with time she will definitely pick up on the whole cheer.

More Frustration

2009-01-14T16:29:00.003-05:00

So I got a note from Katie's teacher today asking me to sign something on her IEP. It was concerning the use of the rifton chair (a chair they strap her into). I called the teacher and she said that they don't use the chair everyday but some days have to use it for up to two hours a day. We talked and are going to try to get a PCA (personal care assistant) for Katie. Also we talked about Katie maybe having ADD or ADHD. Well I called her pediatrician and they said that usually the school test for that but they will check into it. Hopefully I don't have to fight with anyone about this. Wish me luck.

Good day and Bad day All in One

2009-01-12T08:07:00.002-05:00

Well yesterday was one of those days were I had a break down. I have know for about 7 years that Katie had down syndrome and most days it is no big deal, but every once in awhile I have one of those I feel sorry for myself days. Yesterday was one of these days. I don't know what started it but Jessie said what is wrong and I told him that he just doesn't understand because he has his typical little boys and I don't have a typical little girl. Don't get me wrong I love Katie to death but I worry about the future too much. I worry that she will never go to prom or get married. I am a girly girl and Katie doesn't care about that stuff yet. I know she is only 6 1/2 and has plenty of time to grow up but she is my only little girl and I don't want her to miss out on anything. Well enough about that.

We also went to cheerleading yesterday. Katie and another girl both joined the team yesterday. Katie was sitting very nicely for the first 10 minutes and then they gave her a buddy ( another cheerleader from a regular team who was about 9 or 10). They all began to stretch and Katie was sitting there stretching and I thought wow she is actually staying in the group and behaving. Not a minute later she was up running around. I was getting so frustrated and embarrassed. The other mothers assured me that there kids did the same thing when they first started. Katie finally sat and watched them practice and joined in a little. We will definitely be joining and I am hoping that in a couple of weeks when they go to a competition that Katie will go and do good.

Cheerleading

2009-01-06T10:56:00.003-05:00

So after watching my nieces cheerleading competition I got to thinking about how great it would be if Katie could do something like that. So began the search for a special needs cheerleading team. Well I found one in Baltimore, MD which would take me an hour to get too. So then I remembered that I new someone who also had a daughter with downs that had talked about a squad before, so I emailed her. Well she did in fact start a squad that had 8 girls on it ranging in age from 5 -18 who all had special needs.

We went out Sunday to check it out but practice was cancelled so we will have to go back this Sunday. Katie did see some other girls practicing and really wanted to join them. It sounds like this might be something that she really like. The other mother told me that they have two coaches and each girl has a buddy (older cheerleader) with them and that they will even be able to go to competition.

When I left I was excited and a little depressed. The reason for this is I know I am not supposed to compare Katie to other kids but I can' t help compare her to other kids with downs. The other two girls that were there were around 9 years old and both were verbal. Well as everyone know Katie is only a little verbal, not that she doesn't try. I kept telling my self that maybe Katie will talk like that when she is there age (which is 2-3 years from now). I am convinced that she will indeed talk one day but I still worry about it.

Anyway I will let everyone know how practice goes on Sunday!

New Years Eve

2008-12-31T10:20:00.003-05:00

Well another new years eve is here and like every other new years we will be spending it with the kids. I love being with my kids but I would like to get dressed up and go to an adult party and feel like a real grown up. I was telling my mother the other day that I don't know if I will ever be able to go out on new years because I am not sure if Katie will ever be at the point where she can be left alone. Of course my mother always knows how to make me smile and says don't worry when she turns 21 we will go out for new years and get her drunk (LOL). So I guess I only have 15 more years to wait.

I hope everyone has a happy and safe New Years!!!

Family Pictures

2008-12-29T08:37:00.002-05:00

Yesterday we went to get family pictures done. It was Jessie, me, our kids and my three nieces and nephew. The pictures turned out great but Katie's head is leaning in everyone. I have noticed that every time she get professional pictures done she leans her head to the side (I have no idea why). If any one is planning on getting pictures done Portrait Innovations if a great place. The pictures are just as good as if you go to the picture people and are very reasonable. They even have a $10 package.

Poor little girls that only have brothers

2008-12-24T09:25:00.002-05:00

Poor Katie she needs a sister (but she definitely isn't getting one). She only has brothers so when it comes to toys she always wants what they have. I guess she thinks what they have is better than her girl stuff. I do buy her the same stuff the boys get sometimes to make her happy but Jessie said I need to stop doing that because she is a girl. Maybe it would help if she had some little girls to play with.

We exchanged presents with Jessie's family this weekend and she didn't want to play with any of the stuff she got. She was more interested in Brady's toys. I know she likes her stuff because she does eventually play with it but I think sometimes peoples feeling get hurt, because they thinks she doesn't like what they got her. I explain to everyone that she does like her gifts but she just wants what the boys have. We will be exchanging gifts with my family tonight so hopefully she will play with what she gets.

Merry Christmas!!!!!!!!!!!!!!!!!!!!!!!!!

Grandparents

2008-12-18T21:49:00.002-05:00

Katie really loves her grandparents. Yesterday my dad stopped by to see the kids. If he doesn't see them every couple of days he goes crazy.

Tonight my in laws came to drop off some meat and Katie put her jacket on right away and went over and grabbed my mother in laws hand. Then she walked over and got her shoes. It was so cute. Of course how could they say no to her, so they took her shopping with them and brought her back a few hours later. She came home with a big smile on her face.

Katies Hair

2008-12-16T08:21:00.002-05:00

So I did it. I got about 6 -8 inches cut off of Katie's hair. Now it is up to her chin and it looks so cute. I had my aunt do it because Katie does not like to sit still and I wasn't sure if a hairdresser would have patience for it. The last time I got it cut we went to a hair dress but we only had about 4 inches cut off. It took about 40 minutes to cut her hair because she didn't want to stay still. She looks so much older, maybe people won't keep asking me if she is 3. I will post pictures when I get a chance.

Developmental Pediatrician

2008-12-10T16:47:00.003-05:00

I have decided that Katie should see a developmental pediatrician so that I can get there input. The problem now is getting an appointment and getting insurance to pay for it. We tried a doctor at Hershey Medical center and they are only excepting new patients that have autism. We also tried a hospital that is about 2 hrs away (I can't remember the name of it) and they have a 2 year waiting list which we were put on and we also got an appointment with a doctor in york for march. This doctor is going to see us before then for a 1hr appointment and the march appointment is for 4 hours of testing but we are not sure if insurance with pay for this and it is around $1,000. I am going to keep my fingers crossed that they do. I would like to see the developmental pediatrician so that maybe by now they can tell me if they think she is mildly or severely the r word. I don't know why I can't bring myself to type it but I just can't. I know that everyone with downs has some form of it but I just don't see her that way. Maybe it is because people don't really understand what it means and look at it as something awful. One day maybe I will be able to say it.

Katie Knows her Letters!!

2008-12-10T07:25:00.002-05:00

Katie has mastered one of her IEP goals in only a matter of a couple of weeks. When her teacher shows her a picture of a letter and gives her three to choose from she always picks the right one. Now they are working on just saying Katie show me the A for example and she is finding the right letter. Last night while we were at my nieces birthday party, Katie was playing with there letter magnets so I picked out 4 and said Katie give me the D and she did. She got almost everyone right. I was amazed. This is something that I wasn't sure if she was ever going to be able to do and this makes me think it is going to be possible for her to read when she gets older. Way to go Katie, I am so proud of you!!!!

Faker

2008-12-04T10:26:00.003-05:00

Well Katie woke up for school today and when she was getting her cereal out for breakfast she threw up on the kitchen floor. So of course I didn't send her to school. Now she seems perfectly fine. This always happens, I keep her home because she doesn't feel good when she gets up and then she is fine for the rest of the day. Sometimes I wonder if she is a faker. Probably not!

Katie and Daddy

2008-12-02T19:09:00.002-05:00

Katie is always excited when daddy gets home from work. She yells daddy really loud and runs to give him a hug. Tonight Jessie was on the roof of our deck hanging up Christmas lights and Katie was watching out Brendan's window and I said daddy is hanging up Christmas lights and she yelled lights. I was so excited.

Another thing daddy does for Katie sometimes is her hair. It is the cutest thing I have ever seen. Most men don't want anything to do with fixing a little girls hair. Tonight Katie had a big knot in her hair and I am a little rough when I do hair so he brushed the knot out and Katie didn't make a sound. If I was doing it she would of whined the whole time. Thanks daddy.

Thanksgiving Vacation

2008-11-30T15:13:00.002-05:00

On Wednesday I had to go to Delaware to pick up my older nieces and nephew (they are 16, 14, 13 &12). I dropped Brendan off at my mom's work because I drive a minivan and can only fit seven people in it. When I dropped him off Brady was very upset and cried for almost a half and hour. I pick the kids up and went back to my mom's house. Everyone visited for awhile and then we all went to my house. We heat our house with a wood stove and the upstairs sometimes doesn't get very warm so we set up mattresses in the living room for everyone to sleep like a big sleepover.

On Thursday we went to my mothers for dinner and had a great time. We ate dinner, played cards and just enjoyed each others company.

On Friday, Jessie, Brendan and my nephew Mac left for the eastern shore to go hunting. Myself, Katie, Brady, Myndi, Cora and Kirsten headed to there house in Delaware. We got there around 2pm and by 4 pm my kids were driving me crazy. I was supposed to stay until Sunday but I woke up Sunday morning with my monthly friend (.) and the kids were still driving me crazy so we packed up and hit the road around 8:30 am.

On the way home Brady kept crying about getting out and my cramps were so bad I thought I would die. We were going through the drive thru at Mc Donalds and Brady of course got out of his car seat and I was dying with cramps so I parked the car and began to cry. Brady just started laughing at me and then realized I was not faking and said mommy stop crying. Katie of course was being an angel. She is very good in the car unless she is sitting next to someone and then she has to irritate them. We proceeded to head home and ended up stopping at Jessie's mom's house. We stayed the night there so I wouldn't have to worry about starting the wood stove to warm the house.

Well today Jessie and Brendan came home early and we really wanted to go get our Christmas tree but it is very rainy so it will have to wait until another day. But I can't wait to decorate.

Another crazy night

2008-11-24T19:56:00.004-05:00

Once again I am having a crazy evening. Katie has been into everything since she got home from school today. While I was on the computer trying to find out how Jessie can get a replacement card for his hunter safety course he took 17 years ago, Katie decided to pretend she had to go to the bathroom so she could get into stuff. I was looking stuff up when I heard Brendan yell. Katie and Brady were dumping a bottle of stool softeners down the drain. This isn't the first thing to be dumped down the drain, last time it was a whole bottle of peroxide when Jesssie was home with the kids. That time I had to call poison control just in case she drank any but luckily she didn't. I pray that everyday is a step closer to being sane again.

What I am thankful for

2008-11-24T14:58:00.005-05:00

With thanksgiving approaching fast I have been thinking a little about what I am thankful for.

First and most important I am thankful for my family each member for a different reason. First my mother because she is always there when I need her and she is truly my best friend.

Second for my dad, he is not my birth father but he is the only father I have ever had and I couldn't love him more if he helped my mom create me.

Next for my husband he is best husband anyone could ask for, he puts up with my never ending attitude and loves me no matter what. And of course for my children, Brendan is so smart and such a wonderful help I don't know what I would do without him, Katie she brings a smile to my face everyday and has taught me to appreciate the little things in life and then there is Brady he might be nerve racking sometimes but he is just so darn cute.

I am also thankful for the friends I have and the friends I no longer have, each one has affected my live in many ways good and bad and made me the person I am today.

I hope everyone takes the time to think about what they are thankful for and appreciate everything and everyone in there life.

The ability to do anything.

2008-11-19T18:06:00.005-05:00

Today I was sent an email from a person I new in high school and it got me to thinking. In the email she said "You are brave I don't know if I could handle having a child with a disability". I think of it this way god only gives you what you can handle although he pushes pretty hard sometimes. Also I don't think of Katie as having a disability because she will learn to do everything anyone else can it just is going to take her longer. When I look at her I don't see a disability I see the ability she has to do anything. To everyone in our family she is just Katie not the kid with down syndrome.

WHO MOTHERS THE CHILDREN WITH DISABILITIES

2008-11-19T18:05:00.001-05:00

WHO MOTHERS THE CHILDREN WITH DISABILITIES

This year, nearly 100,000 women will become mothers of children with disabilities. Did you ever wonder how mothers of children with disabilities are chosen?Somehow I visualize God hovering over the earth selecting His instruments of propagation with great care and deliberation. As He observes, He instructs his angels to make notes in a giant ledger.Finally, He passes a name to a angel and smiles, "Give her a child with a disability."The angel is curious, "Why, this one, God? She's so happy." Exactly smiles God."Could I give a child with a disability to a mother who does not know laughter? That would be cruel." But has she patience?" asks the angel." I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy"."But Lord, I don't think she even believes in you." God smiles, " No matter, I can fix that.This one is perfect. She has just enough selfishness.The angel gasps,"Selfishness? Is that virtue? "God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes.. here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says " Momma " for the first time she will be present at the miracle and know it!When she describes a tree to her blind child, she will see it as few people ever see my creation."I will permit her to see clearly the things I see...ignorance, cruelty, prejudice.. and allow her to rise above them. She will never be alone. I will be at her side every minute of her life because she is doing my work as surely as she is here by my side"

The week seems to be getting better

2008-11-19T10:02:00.003-05:00

Yesterday when Katie got home she was so lovable. All she wanted to do was give me hugs and kiss all night. I love days like this. When I see her smile, laugh, or give hugs and kisses it makes everyday worth it. Thanks for making my day Katie I love you.

My crazy life

2008-11-17T18:38:00.003-05:00

So it's not looking like a good week so far. Last night Brady was eating Nerds (the candy). After spilling them on the floor I saw him putting one up his nose. I immediately went over to him and got them out of his nose and checked the other side and didn't feel anything. A few minutes later he was crying and my husband noticed his nose bleeding. I made him blow his nose and guess what more nerds came out the other side. Well we got all the nerds out and he was fine.

Today I was attempting to get a shower while he was watching a movie and the other kids were in school. I looked out the shower curtain into the living room and he had toilet paper all over the place. I asked him to clean it up and he put the roll of toilet paper away but left the rest where it was. I thought Katie was a handful until I had him. He just does the craziest things. He is always full of energy.

Mommy

2008-11-16T15:01:00.003-05:00

The other night while I was cleaning up Brendan's room Katie came in and called me mommy for the first time. She has called me ma for the longest time and when she actually said mommy I wanted to cry.

Shopping

2008-11-16T14:50:00.004-05:00

Not that everyone hasn't already figured this out but my life is a little chaotic. Yesterday Jessie needed to get new glasses so we went to Lancaster and I dropped him off at the eye doctor.

I decide to take the three kids to Toys R Us. I should of know better. Katie and Brady wanted to touch everything and of course Brendan wanted to show me what he wanted. Well needless to say we weren't in the store long. We picked out what everyone was going to get and went to the register. While I was trying to pay the kids spotted a pogo stick in the front of the store and immediately went there. I was trying to pay while yelling at them not to get on the pogo stick.

After picking Jessie up we decided to go to the outlets. While trying to shop Katie kept trying to run away. I was having trouble holding her hand and looking at stuff so I attempted to put the child harness one her, big mistake. She began to scream like someone was killing her and Jessie ended up taking her to the car.

After the melt down I was ready to go home. I definitely am not going to give up on taking them shopping but maybe next time we will only go to one store.

The chaos drives me crazy but the few time that I have went shopping by myself I have been bored and missed them like crazy.

Dinner

2008-11-13T18:01:00.003-05:00

Dinner is always a crazy time at our house. Brendan will sit and eat but as for Katie and Brady that is another story. Brady doesn't want to sit and eat and is usually running around. This of course gets Katie mad being the mother she is. She is usually chasing him or yelling and signing eat at him. Once we get everyone to sit we have the problem of Katie trying to take his food or wipe his face.

We use to take the kids out to dinner but rarely do now. When we have tried to go out to dinner lately it is really stressful. Brady of course doesn't want to sit and is up and down in his seat and this makes Katie want to do it. We usually can get her to stay seated but it is impossible to get him to sit.

I hope and pray that one day we will have a nice peaceful dinner!

Speech

2008-11-13T10:21:00.000-05:00

Katie's biggest delay is in speech. We think that this is due to her having a trach for the first 3 years of her life. She does say a few words like, mommy, ma, daddy, ready, sorry, eat, pop pop, mom mom and a couple others. She will sign some too. She is very smart but I don't think people realize this because of her speech delay. I worry because speech is the biggest part of life.

I see other children with down syndrome and they are talking and I think why can't she do it but I know I shouldn't compare but it is hard not too.

My Story

2008-11-13T09:45:00.002-05:00

I am the mother of three wonderful children. My oldest son is Brendan who is 8 years old. My daughter Katie is 6 and my other son Brady is 2.

I had a normal pregnancy with my first child so when I became pregnant with my second I wasn't worried at first. During the beginning of my pregnancy I felt like something was wrong. My mom told me that maybe I felt different because I was maybe going to have a girl.

After I had my AFP test (Alfa fetal protein) done I got a call that I was at high risk for down syndrome. My husband, myself and my mom went for genetic counseling and were told that my risk for my age (23 at the time) should be 1 in 1000 but by my due date on the ultrasound they were 1 in 216 and by my due date of my last period they were 1 in 76. After the counseling we had a level two ultrasound and they notice that the baby had problems with the heart. We also found out at that time the it was a girl. We were giving the option of an amnio and they of course mention terminating, but of course terminating was not an option because this was our baby and we were going to love her no matter what. We went home and decided that we wanted to have the amnio done because I didn't want to wonder for the rest of my pregnancy.

We had the amnio done and were told that we would have the results in 7 to 10 days. On the 7Th day I got the phone call. The doctor asked me if I was sitting down and told me that the baby definitely had down syndrome. I was not surprised neither was my mother. I knew it in my heart that she had it from the time of the first call about the AFP test.

During my pregnancy I would go every two weeks to the doctors for echocardiagrams of the baby's heart. When I was 31 weeks and 4 days I went for my scheduled doctors appointment and my doctor was running late so I had to wait. I was also scheduled for an echo that same day and my doctors was taking so long that I had to leave without seeing him and go to the echo. When we went for the echo they told me that I needed to go right away to the hospital that I was going to deliver because the babies heart had got worse. When we arrived at the hospital I was told that due to the size of the babies heart I would have to deliver. They also said that if I went to full term she would not make it and that there was a good chance that she wouldn't make it if I delivered now. This was on a Friday and I was told that they were going to give me shot for the babies lungs over the weekend and induce me on Monday. I was induced Monday and did not deliver until Tuesday.

Katie was born in June 18, 2002. She weighed 4lbs 1 oz and was 15 1/2 inches long. She was taken immediately to the NICU and put on a ventilator. She has ups and downs for her first week and when she was 9 days old I got a call early in the morning and was told that they were going to do her open heart surgery right away. Katie has a variant of Epstein's Anomaly. She also had a small ASD. They told us that Katie had a less than 50 % chance of making it through the surgery but she was a fighter and did very well.

For the next 7 weeks they tried several times to take Katie of the vent but had no luck. When she was 8 weeks old they gave her a trach. She spent her first 11 weeks in the hospital and when she came home she had a trach, oxygen, feeding tube and various machines to monitor her.

She was in and out of the hospital for the first few years of her life. When she was about two she started to only need oxygen when she was sleeping. She had her tonsils and adenoids out when she was 2 1/2 and when she was 3 years and 1 month old she had her trach removed. After removal of the trach she no longer required oxygen.

Katie is now 6 and in 1st grade. She still has medical issues and will require another open heart surgery to replace her value but she is doing great.