Wednesday, December 2, 2009

Friday, November 27, 2009

We're Home!

I had good intentions of keeping everyone updated better. I started many posts but there never seemed to be enough time and when I came back to the computer what I had wrote had become old news. I will write more on Kaitlyn's courageous "heart" journey soon, but for now a quick update for all our loyal readers.

We are home, we came in last night. It all happened so fast. On Sunday we were told 5-7 more days and we left Wednesday. She is eating like a champ, Kaitlyn did all the hard work and earned us a ticket home!!! We snuck in and surprised everyone, it is great to be with the boys again. I have never missed anything or anyone quite as much as I missed them.

We have a lot to be thankful for this Thanksgiving! Happy Thanksgiving to everyone!!!!
This picture is from Monday! It was the first day that she started acting like herself. She started smiling again. Oh did I miss that smile! She is 100% tube free now. That feeding tube you see in the picture is history, she's eating great on her own!!!

Friday, November 20, 2009

I see you!

Kaitlyn had a few things going on today. Vent is still in, she developed 2 bacterial infections and has tons of chest secretions. They are suctioning her almost hourly. Doctors are anxious to get her off the vent. She has sprinted well (practice runs), but they are afraid her secretions will be unmanageable with out the vent tube to suction them out of. She had a blood transfusion today (she's anemic, and has had a few problems with her oxygen saturation), they thought the new blood would help with her oxygen levels and it has. Other then that it is a waiting game. She is waking up more, she opened her eyes today and really looked at us for the first time since surgery! She gets uncomfortable from time to time, they are weaning her off of her pain meds hoping that will help her come off the vent. Up until now she's been pretty snowed. Today was an okay day. It could have been worse. We are praying for an excellent day tomorrow.
We are getting a few visitors over the weekend, it will be a nice distraction having them here. I probably won't get to a computer until Monday, so look for an update then.
Thanks again to our amazing support team, and the many people who are praying for our brave little girl. See you Monday!

Thursday, November 19, 2009

KAITLYN'S COURT, Post Op Day 2

It been a pretty eventful 24 hours for little Kaitlyn. Unfortunately we were not able to see her much yesterday. There is a very sick little boy in her area who needed a lot of stabilization and procedures done at his bed side. Eventhough we weren't allowed in a lot we knew she was in good hands.

Here's some of her most recent events:
  • Her heart rate dipped into the high 60's overnight, they had to temporarily put her on a pacemaker (ugh). They continue to have her attached to the pacemaker, not turned on, in the event her heart rate dips again.
  • Her lungs are wet, this is normal to a certain degree due to the excess fluid from the heart surgery, the fluid that doesn't make it out the drain weeps into her tissue and ends up in her lungs. Kaitlyn has more then they would like to see. There was talk of placing a chest tube in to drain the fluid off. They ordered an ultrasound and the fluid looked better, for now they just increased her diuretics, but will watch it close with more Xrays and ultrasounds.
  • Her catheter was removed today, one more thing out!
  • She started tube feeds this morning. She gets less then an ounce every few hours and they will increase it over time, she tolerated it well.
  • For some reason her right leg is cooler then her arms and left leg, they are watching it, they found a pulse in her leg though, they don't seem too worried.
  • They continue to sprint her (this is when they try to allow her to breath on her own with little to no help from the vent). She's doing OK. She isn't getting rid of as much carbon dioxide as she should. Again it is only 2 days after surgery so she is still within the normal range of where recovery should be.
  • Kaitlyn got moved from the pediatric cardio ICU to the normal pediatric ICU this morning. They needed her bed for a baby just out of surgery. I wasn't thrilled, I loved where we were at. All the nurses specifically worked on heart babies all the time, and all the doctors were constantly around. Her new nurse is great! It was just stressful watching them move her. She was the chosen baby because she was doing better then most. I guess that's a good thing, but to us this still seems so critical.

Keep the prayers coming! Thanks again for all the support!

The ball's in Kaitlyn's Court, stay strong sweet angel!
Pediatric ICU and PCTU, 5th floor MOTTS




Grandpa Skocelas came to spend the morning with his grand baby today. He's been all over the state this week driving back and forth so he can be with the boys and Kaitlyn. He heads back to TN Saturday morning. He needs to be with my Mom now. Thank you to my Aunt Connie for flying to TN to be with my Mom so my Dad could be up here.

Our tough little fighter 2 days out of surgery

Our favorite nurse so far...Mumtaz (sp?) What an amazing lady with a beautiful heart. Kaitlyn got moved to a different part of the PICU today so we had to say goodbye! She was her nurse the last 3 days. The whole staff has been great we just really connected with Mumtaz.






Wednesday, November 18, 2009

24 Hours Out Of Surgery...She's An AMAZING Little Girl

According to the nurses and doctors Kaitlyn's recovery is right on track. She's had a few ups and downs but apparently this is "normal." It's difficult to see her like this. They are having a hard time keeping her still and sleeping. The nurse said that this is common in kiddos with Down syndrome?! She's on several medications. Some of them include a morphine drip to control the pain along with an anti-anxiety to help calm her and an amnesia medication to help her not remember. A line that was placed in her pulmonary artery to monitor the pressures in her heart was removed this morning. This was an extra line put in to help monitor her pressures since she had a little trouble coming off of bypass after surgery. So one tube down and several to go. Its PROGRESS so we'll take it. Her next major milestone will be to start weaning her off the ventilator. Things change in an instant around here so we will see what today brings. The nurses are great. They talk about Kaitlyn's surgery like it is minor. And even though in doesn't seem minor to us it is one of the simpler surgeries compared to many of the kiddos in the Pediatric Cardio ICU. You would not believe what some of these kids have been through, soooo sad! Please continue to pray for Kaitlyn and all the other little fighters on her floor.
Below are some pictures of Kaitlyn this morning. They are a little hard to look at but let me explain why I feel its necessary to post them on her blog. When I found out about Kaitlyn's heart defect I searched far and wide looking for info about her upcoming surgery. I had read all the medical stuff and I just wanted to find things that would help prepare me for what we were about to go through. I found this on different blogs. It helped me tremendously. So if there is a family out there who follows our story who has been placed on a similar path I hope this helps them. Kaitlyn will continue to recover and each day her pictures should look better and better! Thank you to everyone who is praying for our AMAZING little girl!

Our Amazing Little Fighter!


Please get some restful sleep my beautiful angel!









Tuesday, November 17, 2009

She's Out of Surgery!!! And Some Pre Op Pictures!

First the update.
Kaitlyn went into surgery this morning at 7:30. She was happy, and a little hungry. She was sleeping when they took her back. We received a couple updates throughout the surgery. The last one was from Dr. Ohye himself. She's out of surgery. He said she did well. She had a little trouble coming off bypass but now is doing great. They are waiting for her bed to get ready. We can see her in about an hour and a half. They also did an echo right in surgery to look at her valve repair (this was the most important part of surgery). They said it appears there is zero leakage which is better then the average healthy heart. We are thrilled! Praise God! I will continue to post throughout her recovery. Thank you for all the support and prayers!
Now it's time for pictures of my little hero. These are from the couple days before surgery and her pre op testing.




Happy Baby!




I wanted a picture of her chest before surgery, don't ask me why, I just did!

The morning of Pre Op before the tests began.


Her chest x-ray, as my friend Angie would say, "Really!"
Come on now!


Her sedated echo. She was sound asleep.


This morning before surgery all cute and happy in her gown.



Monday, November 16, 2009

In Christ Alone

Kaitlyn and Blair are sound asleep in the hotel room beside me. My sweet boys are back in Muskegon having peaceful dreams of super heroes and trucks and here I sit awake. How do you sleep on a night like tonight?

Tomorrow morning my sweet angel at just 3 months old will have open heart surgery. Just typing those words makes my chest tight and I have to remind myself to breath. She's my hero, the love of my life! I thank God for her each day! Tonight I'm struggling with a lot of internal turmoil and the ONLY thing that is getting me through is turning it all over to God.

In Christ alone I place my trust!

Today Katie had pre op all day. We arrived at 8:30. The morning started with a chest x-ray. That was uncomfortable to watch. She wasn't in any pain or discomfort though, she didn't seem to mind. I'll post a picture of that crazy contraption later, they had to strap her in sitting up to get a good picture. You would think with all the modern technology they could come up with a better way to get good x-rays. Next was a sedated echo. She took some oral medication and drifted off to sleep. They did a very thorough job, it lasted about an hour. Next we fed her and met with a Cardiologist where we talked more about her heart defect (AVSD) and surgery. The day ended with blood work. That was the worst part and the only time she felt pain. I was just about to ask for another phlebotomist when she finally got a vein. After that we went to our room and got settled. She was so happy tonight. Thank goodness she has know idea what the morning brings. I will write more tomorrow with surgery updates.

While your praying for Kaitlyn please say an extra prayer for my Mom tonight. This afternoon she was diagnosed with Lymphoma. I'm not quite sure why all this is happening like this. Mom, I'm sorry I couldn't be with you today. A girl is never to old to want their Mom, I sure wish you could be here. Kaitlyn will be better soon and we are going to help you fight this. I Love you!

We're on our way....

We are set to leave for Ann Arbor at 5am. I tucked the boys in and said goodnight and goodbye. It was sad, but I'm ready to get the ball rolling. I had a lot of anxiety today, I'm sure it will stick around for awhile. We will be in good hands though. I will be posting updates as often as possible. Pre surgery testing is all day tomorrow and the surgery is 7:30 Tuesday morning. Thank you everyone for your constant prayers!

Wednesday, November 11, 2009

A Horribly Amazing Day!

Today was quite a day. With Kaitlyn's surgery only days away the mood in the house has been, well...tense. We all seem to be wearing our emotions on our sleeves, even the boys. They have little idea what the next couple weeks will bring but clearly sense something is going on.

There is a lot to get done before Sunday. The biggest stress we've had is waiting for the official approval from the insurance company to allow Kaitlyn's surgery to be performed at the University of Michigan. We've been fighting this battle since we learned of her heart defect (complete AVSD) back in June. Surgery was scheduled last week. The doctors seemed confident the surgery would get covered but Blair and I remained less optimistic. We would believe it when we had an authorization number. The days have continued to come and go and no official authorization. Our family and friends have been rearranging there lives for this and all I could think is that our plans would fall apart at the last minute.

Tears of joy came this afternoon when we received the phone call that she is 100% approved. I literally felt weight being lifted from my shoulders. The fight was soooo stressful, but we won the war. We fought for Kaitlyn and it payed off. Her surgery will be performed by an amazing surgeon, Dr. Richard Ohye, at one of the top pediatric cardiology hospitals in the nation. (sigh) God is good!

We will leave for Ann Arbor either Sunday evening or very early Monday morning. Her pre-surgery testing will begin Monday morning at 10am. She will get a chest x-ray, sedated echo, EKG, and blood work. We will meet with an anesthesiologist and a cardiologist. Tuesday morning the surgery is scheduled for 7:30 AM. Her surgery will last approximately 4 hours. She will then go to the PICU where she could be 3-5 days. Once the ventilator is removed and she is breathing well on her own she will get moved to the general care floor. Her estimated stay is 10 days give or take. All healthy adult visitors are welcome! Hospital policy due to H1N1 is no kids under 16. The hospital advised our family and friends to watch a video to help us prepare for surgery and Kaitlyn's recovery. If you plan on visiting take a peak at the video. Thanks again to everyone for all your continued prayers. I hope to keep updating through her surgery and recovery.

Neighbors Helping Neighbors...Friends Helping Friends!

Having a sick baby is a lot of work, and having two small boys and our everyday responsibilities on top of Kaitlyn's demanding care has become impossible. We are in survival mode. Our priorities have changed. Things that once would have been considered to be on top of our to-do list have been put on the bottom or temporarily removed. The kids are number one. Kaitlyn's paper work and her therapies are next and everything else gets put on hold.
All the leaves up here in Western Michigan have fallen. Most people are working hard to get them up before the snow falls. We planned on ours waiting until spring, we have little time and zero energy. Sunday afternoon much to our surprise we heard noise in our front yard. Our close friends (who are also our next door neighbors) were raking our leaves. What an awesome random act of kindness. Thank you, thank you to Fred, Becky, Caden, and Morgan!
I would also like to thank everyone else who has been helping us out. We've needed to ask more favors then ever before in the last weeks and months since Kaitlyn was born. With her surgery next week we need to rely on a lot of upcoming help. Thank you to everyone who is rearranging their lives for us in the next weeks, whether its to be with the boys or Blair and I in Ann Arbor. We are truly thankful!








Happy 5th Birthday Brady!



FIVE YEARS OLD

Please, everybody look at me!

Today I'm five years old, you see!

And after, this I won't be four,

Not ever, ever, any more!

I won't be three-or-two-or one.

For that was when I'd first begun.

Now I'll be five a while, and then

I'll soon be something else again!

-Mary Louise Allen



I can not believe Brady is turning five. The years are flying by. This past Saturday we "threw" together a party. Normally I spend much time planning a party for the kids. I really enjoy having our friends and family over. My favorite part is making a special cake. Brady's actual birth date is the 17th. Because Kaitlyn's surgery is scheduled that day we had to do things different this year. I made a few quick calls to local friends, my dear friend Tiffany made an awesome cake and we had a party. My mother in law watched Kaitlyn for us, we had to keep her away from all possible germs. It was a great day! Thank you to everyone who helped make this day special for Brady!













Caden, Morgan, Brady, Bryce, Macey, Elyse, Paige, Caleb





Thursday, November 5, 2009

A Quick Update

My mom's surgery was today. She did well. She is already home. She's quite sore and has been instructed to take it easy (little walking) for the next few days. My sister is there so she will take good care of her. It can take up to two weeks plus for the pathology to come back. I don't do well with waiting.

Little Kaitlyn went to the doctor again today. We seem to be there a lot these days. She weighed in at her highest weight yet 10 lbs 14 oz. She's been playing the gain an ounce lose an ounce game all month. Maybe she can reach 11 lbs before surgery. The last two days she's had this crazy rash. I thought it was because of her low fever and the virus she's been fighting. The doctor said it looks like an allergic reaction to the amoxicillin she was on...lovely! Good thing there are several antibiotics to choose from since she can no longer take anything from the penicillin family...ugh! If its not one thing its another!

Would you like to make a difference today!

If you would like to make a difference today, please see below...(This is a true request) A 5yr old boy named Noah Biorkman, is in the last stages of a 2 1/2yr battle with Neuroblastoma Cancer. The family is celebrating Christmas next week and Noah's request is to get lots of Christmas cards..Lets get him some.

Please send cards to:

Noah Biorkman
1141 Fountian Viewcircle
South Lyon, MI 48178

Thank You!

His story is in the Detroit news, read here.

Feel free to reblog this to reach as many people as possible!

Wednesday, November 4, 2009

When It Rains It Pours!

Surgery Is Scheduled




We went to Ann Arbor yesterday. The insurance company approved a consultation with Dr. Richard Ohye. We have been waiting (fighting) for this day since we found out about Kaitlyn's heart defect when I was 27 weeks pregnant. Due to her increase in symptoms, mainly lack of eating they saw no reason to wait for surgery. It is scheduled for November 17th...Ugh! Brady's 5th birthday! MOTT children's hospital seemed so confident the insurance company would give the final OK that they scheduled the surgery. Blair and I are cautiously excited! We still have the fear PH won't come through, but we have to keep the faith. I'll write more specifics about the surgery later. My main focus now is to plan a little party for Brady. He is at such a fun age, and he is well aware his birthday is very soon. I need to make it special since we won't be here on his birthday!




Please Pray For My Mom
My mom is having surgery tomorrow. She has been having a lot of pain in her left femur. After many tests finally a bone scan found a dark "suspicious" spot in her bone marrow in her left femur. They will go in and remove what they can and biopsy it. Our biggest fear is cancer, but the doctors said it can be one of many things. My mom is the strongest woman I know and unfortunately isn't new to battling cancer. When she was 21 she had Hodgkin's Lymphoma, and with great doctors (U of M) and a lot of determination she beat it. She needs a lot of prayers right now. Unfortunately I can't be there but my sister went down to be with her and my dad. Thanks Jenna! We are praying for a miracle right now. I'm so sorry I can't be with you tomorrow Mom!





Happy Belated Halloween!




Out of all the candy the boys managed to get their hands on the favorite item in their bags were these crazy vampire teeth. So silly! The week around Halloween H1N1 over took our house. Both boys were mildly sick with fevers and a nasty cough. I on the other hand got horribly sick. Definitely the sickest I've been as an adult for sure. We questioned whether or not to let them go out trick or treating but we decided they could go. Brady was much better and Bryce...well I thought a little fresh air couldn't hurt! For the first time in years Brady wasn't a super hero, he decided to be a pirate. Bryce had his heart set on Scooby Doo, and after much searching in stores and online (it was sold out everywhere) he settled for a "cute" monkey. He liked the costume at the store but on Halloween he informed me he didn't want to be cute :( Next year he wants to be scary! Kaitlyn and I stayed home. I didn't even dress her up! She slept through it all. There's always next year!





Friday, October 23, 2009

There's A Lot To Write About.....

A Sick Baby and Lots of Germs
Managing Kaitlyn's heart symptoms has become a full time job. Feeding her takes all day. She would much rather sleep. Four weeks ago before we saw any negative effects from her heart defect she was eating 24oz/24hrs. Over the last weeks it has decreased and she is only eating approx. 16oz/24hrs. On top of it all she has the "crud" that has been going around. Wednesday we went in for a chest x-ray to rule out pneumonia. That came back good but they did see something "viral" on the x-ray. They tested her for RSV and that came back negative. But there is still something nasty going on and its kicking her buns. Which is making her even more tired and less hungry. Arghhhhhh!
To get her healthy and keep her healthy for surgery she will now rarely leave the house. Its impossible to keep her in a bubble but I'm going to try. We have two little boys at home who are constantly bringing home germs. Not to mention my husbands place of employment where there are 1000 + employees and inmates (he's an employee :)) Unfortunately Kaitlyn's visitors will be kept to a minimum and there will be hand sanitizer for all. I'm going extreme!
You would never know how sick she is by looking at these recent pictures. Here are some of her many beautiful faces...



We went to Detroit so we can go to Ann Arbor
This Thursday we went to DMC Children's Hospital in Detroit (ranked 27th in the nation) for a pre surgery consultation for Kaitlyn's upcoming heart surgery. We have been battling with our insurance company since before Kaitlyn was born because we want her surgery performed at MOTTS Hospital at the University of Michigan (4th in the nation), which is "out of network" according to Priority Health (PH). PH had dug their heels in and wouldn't budge until recently. A couple weeks ago we were told we would be granted a 2nd opinion consultation appointment at MOTTS. Finally a small step in the right direction. There only stipulation was that we visit DMC Children's Hospital first. Ugh!! We went to appease the insurance company. Long story short she had another echo and it was decided that they want to do surgery sooner then we had thought. They wanted to do it in November, I convinced them to wait until December. Surgery is scheduled for December 2nd!!!!!!!!!!!!

We have not given up on MOTTS. Hopefully we will have an appointment scheduled to go there by Monday. Time is running out but I'm convinced that what ever is meant to be will happen. I'm still sure that MOTTS in Ann Arbor is the right choice, and I will continue fighting as long as I can.
Kaitlyn getting her Echo cardiogram done on Thursday!
She sat nice and still!
I will write more soon about heart appointments and surgery plans. Please keep praying for Kaitlyn!

Thursday, October 15, 2009

Reese's Rainbow International Down syndrome Orphan Ministry

Baubles
Two things close to my heart: Adoption and Down syndrome
~Help if you can~
-------------------------------------------------------------------------
It is already nearly time for the 2009 Christmas Angel Tree Project! We have nearly (200) children with Down syndrome in need of sponsors and adoptive families in (25) countries around the world. (172) of them already have their own Christmas Warrior, folks who have signed up to provide focused efforts to raise $1000 or more for their Christmas child's adoption grant fund.
For those of you who are new to RR, when you donate $35 or more for one child's grant fund, you will receive a beautiful porcelain photo ornament of your sponsored child to hang on your Christmas tree! These also make very personal and meaningful GIFTS for people you know who are advocates of children with Down syndrome or adoption in general. Nobody wants more scented hand lotion! GIVE THE GIFT OF A FAMILY this Christmas instead.
The Sponsorship Page goes live on November 1. The project runs until December 31. But NOW is the time to prepare, sign up to be a Christmas Warrior, and help 2009 be our most successful Angel Tree EVER! All donations are tax deductible.
God bless each of you, we are so excited for this time of year and grateful for each of you sharing this ministry and this special project with everyone you know! Post about it on your blogs, your FB, your Twitter, your MySpace!
Andrea Faris RobertsExecutive Director, Reece's Rainbow

Wednesday, October 14, 2009

"Heart" Sick

Kaitlyn has a Complete AVSD. In a nutshell she has 2 holes in the septum of her heart and one large leaking common valve. Basically the oxygenated and unoxygenated blood all flow together. As complicated and serious as this is, it is the most common congenital heart defect in children with Down syndrome. She will require open heart surgery in the near future. Hopefully between 4-6 months of age.

We were told we would start to see symptoms of her heart defect, which unfortunately is the start of heart failure, between 8-10 weeks of age. Kaitlyn is 10 weeks old and her symptoms are here. About a week ago she started sleeping ALL the time, and rarely woke up wanting to eat. When she eats she gets tired quickly and stops. Its been a challenge. I've known since I was 27 weeks pregnant that she had this heart defect. I prepared myself, or so I thought, but honestly this is horrible to watch. She lost weight the last 2 weigh-ins at the doctor's office. Thank goodness she packed on the pounds the first 2 months. She's on two medications to help her heart, digoxin and lasix. Last week they increased her lasix and that has seemed to help some. We also started increasing the calories in each bottle to help her maintain her weight and hopefully gain again. I am anxious for her surgery. Hopefully she can still get bigger and stronger beforehand. The success rate is very high for this surgery! I've read many stories about kiddos with this heart defect and they instantly become stronger after the surgery. Please pray for Kaitlyn. She is a strong little girl with a bumpy road ahead. God has a special plan for this beautiful little girl.

Monday, October 12, 2009

Beautiful Fall Weekend with Family and Friends!

Things have been busy lately, but so much fun!

We got an early start to our weekend on Thursday. Patti and Marissa from To Love Endlessly were in Muskegon. They came to Michigan to walk in the Grand Rapids Buddy Walk with family. It is such a small world. They live in North Carolina, we connected through blogger. We met up for lunch. It was such a nice visit. I am so glad they were able to fit us into their busy schedule.

On Friday I went to my first local gathering of Ds moms. There were about 10 women there with children of all ages. Even though they were strangers, it was such a comfortable 2 hours. Since that morning I've ran into many of them, mostly at the Buddy Walk. I look forward to building friendships and a support system.

Saturday morning was the Buddy Walk. It was a cold, crisp Fall morning. Twenty seven friends and family came to support Kaitlyn and the DSAWM. Our team raised $680. Thank you so much to everyone who donated their time and money to support the Down syndrome Association of West Michigan. That afternoon we headed to the Post Family Farm for their fall festival. It is a one stop shop for fall fun, pumpkins, hay rides, corn maze, petting zoo, and pumpkin donuts are just a few of the fun options they have. Check out the video at the top to see a glimpse of our weekend.

Sunday was our 6th wedding anniversary. Where have the years gone? We spent most of the day at home, we all needed a day of rest. My sister Jenna was nice enough to watch all three munchkins that evening so we could go out for dinner. Thank you Jenna! And a big thank you to Blair my amazing husband for being the rock of our family! I love you!

Wow, what a weekend!

Tuesday, October 6, 2009

In Honor of National Down syndrome Awareness Month

In honor of Down syndrome awareness month- Good education regarding people first language.

I am reblogging this from Patti at To Love Endlessly, http://www.bradleyandpatriciah.blogspot.com

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome).

An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.

Encourage people to use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs".

Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.

It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."

Each person has his/her own unique strengths, capabilities and talents. Try not to use the clich├ęs that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same."

Here are some basic guidelines for using People First Language:

1. Put people first, not their disability* A "person with a disability", not a "disabled person"* A "child with autism", not an "autistic child"

2. Use emotionally neutral expressions* A person "with" cerebral palsy, not "afflicted with" cerebral palsy* An individual who had a stroke, not a stroke "victim"* A person "has" Down syndrome, not "suffers from" Down syndrome

3. Emphasize abilities, not limitations* A person "uses a wheelchair", not "wheelchair-bound"* A child "receives special education services", not "in special ed"

4. Adopt preferred language* A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded"* "Typically developing" or "typical" is preferred over "normal"* "Accessible" parking space or hotel room is preferred over "handicapped"

Guidelines from the National Down Syndrome Congress

http://www.theupsideofdowns.org/down-syndrome/proper-language-guide

Monday, October 5, 2009

She's Smiling!!! And A Weekend With Friends!!!


She's been smiling randomly for a while now but I could never get a picture. She's doing it all the time, she's really responding when we talk to her. It makes me melt. What a pretty girl!!!





Koda and Kaitlyn, she lays by the baby all the time. I think she's going to be quite protective!


My friend Kim and her mom Brenda came to meet Kaitlyn on Friday!



On Saturday we went down to Holland to spend the day with my friend Tiffany and her girls. Little Macey is a such a little mommy, she couldn't get enough of Kaitlyn!


Making cinniman rolls, they were soooo good! http://thepioneerwoman.com/cooking/2007/06/cinammon_rolls_/



The whole clan. Bryce, Macey, Kaitlyn, Brady, and Elyse!