Friday, February 26, 2010

Timing is everything

Finding out my newborn daughter had Down syndrome was probably the hardest thing I've ever gone through.  And it's all because of the TIMING.  The diagnosis is usually given before you've even had a chance to bond and get to know your baby . . . either prenatally or moments after your child is born.    The only thing you do know about your baby is that she has Down syndrome.  Not that she's going to love dancing, jumping, coloring, being a sister, smiling, be a fighter, and melt your heart every time she says, "I love you mommy!" 

Just imagine if moments after you gave birth, your doctor put your precious infant baby in your arms and went on to tell you about all of the upcoming challenges for your child.  "Here's your new baby boy.  He's going to be diagnosed with Asthma when he is 2 years old.  He'll never be able to be around dogs because of his severe asthma but he'll beg you for a dog and ask you, almost daily, if he can have one when he dies and goes to heaven.  He will have multiple trips by ambulance to the hospital where you aren't sure if he's going to make it or not.  Oh, there's no reason to cry.  He'll surprise you with all he is able to do even with his Asthma.  Just try to enjoy your new baby."  I use this example because it happens to be one of the challenges my son faces but it could be anything . . . Autism, Diabetes, Seizures, Drug addiction, ADHD, speech delays, learning disability, etc.  Every child has their own obstacles and challenges they each face.  

Luckily the majority of our children's challenges come after we already know them and it does not define who they are, but it's not that way with Down syndrome.   After Morgan was born all I could think about was the Down syndrome.  I knew she was a baby first but my initial focus and worries were on Down syndrome more than the baby.  It was in the NICU when I noticed all of the nurses, doctors and literature referring to Morgan as "the baby with Down syndrome".  It seemed like a mouth full.  Why not just say "Down's baby"?  When Morgan was one day old in the NICU, Gavin said something that included "down's baby" in his sentence.  I told him how the doctors and nurses were saying "baby WITH Down syndrome" and how I thought that seemed like such a long way to say the same thing. He said he liked their way and it didn't matter if it took longer.  It was how we should phrase it too.  From that moment forward we've always tried to use "People-first language  (emphasising they are people first, not a disability).  I try to explain it like this to my friends -- We don't say Ryan is Asthma;  Ryder is Diabetes. So why would I say Morgan is Down syndrome or a Down's child?

This past week we found out our baby-- not such a baby anymore-- Mia, like her older brother, has Asthma.  She was struggling and laboring to breathe on Monday.  I took her to the pediatrician's office and she responded to Albuterol treatments.  She has been on oral steroids and inhalers this past week and is still wheezing but not laboring like she was those first few days.  It breaks your heart to find out your child is going to have challenges with something as crucial as breathing.  But it doesn't change who Mia is or my love for her.  She's still the same adorable baby girl that she was the day before she was diagnosed, now she just has asthma.  Just like Morgan is still my feisty, loving daughter who happens to have Down syndrome.

The goods--pulse oximeter, inhaler and steroids

She fights like crazy when it is time for her inhaler.  But it's all fun and games when she's the one in control.

My favorite picture of Morgan and Mia together

Thursday, February 25, 2010

Enlarging photos on blogger

I'm no expert on this but I got a few emails asking me how to make pictures bigger on your blog. I just recently learned how to do this (kudos to Karol Jeanne!) and will do my best to explain. If you upload your pictures to flickr and photobucket then it's even easier. You just choose large as your file size and import that photo code in the "Edit Html" section of the post. I don't use a 3rd party for importing my photos to blogger so this is what works the best for me. And don't let all the steps scare you. It really does just take seconds to make these changes.

1. Upload your picture just as you normally would do in blogger.

2. Then while in your post, click on "Edit Html".

3. Look for the width and height of that picture (circled in yellow). And delete that whole section of the code.

4. Now you can change the size of your picture. Try a few different sizes to see which one you like best for your blog. Bloggers biggest upload size is s400. You can try s576, s640 or s800 depending on the look and settings on your blog. (You may need to change your blog template settings to accommodate the larger photos. Do this by opening your blogger template, choose "edit html". Scroll down to where it says outer-wrapper and main-wrapper. Change your "outer wrapper" width to 1200px and your "main wrapper" width to 900px. I had to get rid of my cute background paper and use a layout that only has 2 columns like Minima white.)
It should look like this to begin with:

Delete the 400 and put in the new number. It will now look like this:

And you'll have big, beautiful pictures. Or if you're not a very good photographer, you'll just have big pictures. Which was the purpose of this tutorial. Good luck!

Example pictures at different image sizes:

The original size of a large image uploaded on blogger (s400)




Update on "La Prudencia"

I got a nice response from the creator of that blog. He found my family's picture after searching "La Prudencia" ("Wisdom") on google images. He felt like my picture was beautiful and the best one in his search. He also thought my blog was beautiful and a great example of wisdom so added the link to my blog with my picture. He apologized for not asking permission to use it but pointed out that all pictures found in a google image search are free game. Which is true. I don't think making a blog private is necessarily the answer either. It's my understanding that all pictures uploaded through are available in a google image search whether the blog is public or private. He has now changed the picture out of respect for my family. I'm just extra paranoid right now after this past week on facebook. There were two hate groups on there aimed at children with Down syndrome. They had as many as 1500 people join their terrible groups. And they stole and copied pictures of children with Down syndrome and put them on their group page. My first reaction when I saw my family's picture was that it was going to be something hurtful towards Morgan. Such a relief to see someone just saw our family picture as beautiful and the parents full of wisdom and guidance.

Here's an article about the hate groups on FB:

Facebook group targets Down's syndrome kids in Italy
.- An Italian Facebook group that calls for children with Down syndrome to be used for target practice has drawn protest from disability support groups and government officials.

The group page shows a photo of a Down syndrome baby with the word “idiot” superimposed on in, Agence France Presse reports. It proposed a purportedly “easy and amusing solution” to get rid of “these foul creatures” by using them as targets at shooting ranges.

By late Sunday the group had 1,700 members.

Manuela Colombo, the president of a support group for families with Down syndrome, condemned the ad.

“People’s ignorance has no limits,” she told ANSA.

Italy’s Equality Minister, Mara Carfagna, said the group was “unacceptable and dangerous” and promised legal action.

Police action could be delayed because Facebook is based in Palo Alto, California and a lengthy legal process may be required.

One baby in 1,200 is born with Down syndrome in Italy and there are 38,000 people with the condition living there, AFP reports.

Wednesday, February 24, 2010

Would this freak you out?

I have site meter on my blog which allows me to see how many people look at my blog each day. It also let's me see how people are finding my blog. If it's a link I don't recognize I'll click on it to see who has a link to my blog on their blog, it's usually a family who has a child with Down syndrome. Tonight I found a blog that had our family picture as one of the posts. Scroll down to Session 45 "La Prudencia" which means "wisdom" in Spanish. It honestly made me sick to my stomach.

Shoot for the stars

Jack has always been a smart kid and very independent. He set the goal of getting a 4.0 this past term. And he did everything he could to reach this goal--homework, practicing trumpet and waking up early on Friday mornings to earn extra credit. And he did it!!!

I think it might be the first 4.0 in the family. Pretty sure Gavin didn't have one of those and I know I didn't ever have one in Jr. High or High School. Maybe in nursing school. We were very proud of him and all of the hard work and effort he was willing to give to reach his goal.

We'll talk to him later about the "U" (unsatisfactory) citizenship grade in Keyboarding.

Wednesday, February 17, 2010

Our vacation home

Better known as health insurance.

We pay $1000 every month for our family's health insurance. We have to pay for two health insurance plans--a personal plan for everyone in the family except Morgan. She can't qualify for a personal plan. Ever. No matter how healthy she is or has been based solely on her chromosome make up. And Morgan's plan--which is a health insurance pool for individuals who are denied coverage on a personal plan and do not have a group plan available. It's a lot of money to pay out every month, but with 6 kids there aren't many options.

We got Morgan's hospital bill today. $18019.19. And that's just for the hospital. The doctor's bill was an additional $1400.

I have no idea what our out-of-pocket expenses are going to be but am confident it will be no where near $20,000. Makes paying that monthly premium a little easier now even thought I'd rather have that money in the bank or a family vacation home.

Tuesday, February 16, 2010

Happy Love Day!

We celebrated with flowers, candy, 3 sick kids, visits to the pediatrician and lots of antibiotics . . .

We made Valentine cards for school (before suckers were added)

All finished and ready to pass out to friends. Unfortunately Hadley was too sick to go to school and missed her class party.

Woke up on Valentine's morning to a surprise, candy and cookies

and ate pink heart waffles

Gave my mom flowers

And ended the day by decorating sugar cookies with grandma

Monday, February 8, 2010

Baby's got back

Mia received the last of her 2 year old birthday surprises . . . 4 shots at her well baby check up. She cried big tears but was quickly soothed with lots of kisses, a sticker and a lollipop. She also had a little surprise for the doctor . . . an ear infection. Of course she showed no signs of not feeling great. She continued to be our happy, smiling, dancing, singing, giggling little girl. Now just on expensive antibiotics (thanks to the amoxicillin rash/reaction when she was a baby).

But the biggest shocker was finding out we may need to switch our shopping splurges from Gymboree to "Big and Tall"! She weighed 31 lbs (90th%) and is 36 in. tall (93rd%). Which means she is 5 lbs. heavier and 2 inches taller than the average 2 year old. Not that we were surprised. Our little Mimi is anything but average!

Oh, I love this little girl!!!

Wednesday, February 3, 2010

Beginning the journey of Down syndrome

I love following blogs of families touched by Down syndrome. And every once in a while I find a blog where I am amazed at the ability and gift the writer has with capturing in words and pictures the feelings, emotions and thoughts I had when Morgan was born. I stumbled across one of those blogs today. I wanted to share the link because I think it's worth checking out. Especially for all of us in this same journey. enjoying the small things. Be sure to scroll down to Nella's birth story!