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

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,

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

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!

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

Thursday, October 1, 2009

I need advice in regards to Kaitlyn's upcoming heart surgery

Yesterday Kaitlyn met up again with Dr. Malcolm. He is her cardiologist over in Grand Rapids. He is a sweet, honest man. Her appt. went well! She weighed in at 10lbs 12oz. I can't believe it. She's up 12 oz in 12 days. They are amazed, thrilled. Apparently for a "heart" baby that's great. She hasn't had any symptoms of heart failure yet. I had noticed a little sweating, but that could just be because she gets hot?! Either way, the doctor decided to start her on medication (Lasix, and Digoxin). He said symptoms tend to start at 8-10 weeks of age and she was 8 weeks on Tuesday. He wants to see her back in 4 weeks. He thinks as of now surgery will be the first of the year. Hopefully if all goes well we can make it through the holidays before surgery. Where will the surgery be? We don't know yet? That's where I need some help and advice!

As many of you know we live in Michigan. We also have Priority Health insurance as well as Children's Special Health Care for Kaitlyn. There are 3 hospitals in Michigan that can perform her surgery (AVSD), Devos Children's Hospital in Grand Rapids, DMC Children's Hospital of Detroit, and MOTTS Children's Hospital at the University of Michigan. We clearly want the best for Kaitlyn which would put us at MOTTS. They do 3 times the volume of DMC and 9 times the volume of Devos in a year. We have been advised by every medical professional that we should go to MOTTS. So what's the problem right?! Our insurance denied it, they are "Out of Network." Unbelievable. Here's where I need help...

We are battling with PH, the cardiologist is helping but as of now PH isn't budging. I need to find someone else who was in our shoes. We've heard there are families out there who were approved put due to privacy laws they can't tell us who they were. PH can't do that, allow one family over another, that's discrimination. If this was your situation, or if you have any advice in regards to insurance companies I would love to hear from you. Or if your child had heart surgery at any of these hospitals I would love to hear your experiences. The kicker in all this is that if Kaitlyn just had straight medicaid without PH being our primary insurance we could go there no problem. The system is so messed up! I would love to hear from you! Thanks in advance!