It's a go! Our friend Tricia is currently on her way to the OR for her lung transplant. Please pray for the donor's family and pray that the surgery goes well. www.cfhusband.blogspot.com

What's the point of curly hair?

Just a quick update to tell everyone Emma's medi monster has a name. It is Plankie. We called Ella who as at Nanny's hose to help us with a name, she suggested Plankton because the one on Spongebob only has one eye like the little monster does. We thought maybe something more cute and girly would be better so Plankie it is.

All is good today, storms possible in the next few days, even a chance of tornadoes so we are packing medical equipment in an emergency bag in case we have to go for cover in the next few days. Bike helmets and shoes all lined up and waiting for us back in our back bathroom as well. Praying we don't see anything too bad, after the tornado on the ground in Norman that missed us last year, we try to be pretty prepared just in case, that one sure caught us off guard.

Wishing everyone a very happy Sunday.

Medi-monster

Today Emma got her free Medi Monster in the mail. Its from an amazing lady who takes it all on herself to make these little stuffed creatures for kids who under medical procedures and have special needs. The link to her website is. Medi-Monsters

Facebook

For those on facebook Emma now has her own "like" page. Go like it! Emma's Journey on Facebook

All Nurses go to Heaven.

Today would have been Emma's home health nurse  (very first one we ever had!) DeLene's birthday. But she is in Heaven where you never get older. Its been 8 months and sometimes the pain feels like it was yesterday. She is forever our friend, watching over us now from Heaven, and forever the best nurse we ever had or will have. Please pray for her family today! Thank you

Stop using hateful words

I have recently been in some pretty heated conversations about the use of the word retard. I won't get into a big long rant here except to ask people to please stop using it in a derogatory manner. Don't call a person that. Its not a joke, and its not an acceptable medical term. Remember its not about being politically correct, its about being considerate of other people's feelings.

Learn more here:
http://www.r-word.org/Default.aspx

Pretty in Purple

 Not much to update, Emma's doing great. Just hanging out enjoying life. Did want to share her pictures though, she is getting taller I think! Also still asking for prayers for our friend Tricia who has not been able to be added back to the wait list to get new lungs yet, praying that happens soon.

Feeding tube awareness

It is feeding tube awareness week and Emma's sporting the cutest little mickey button in town.

Acceptance is an Empowered movement that Educates others to Embrace diversity and Love life by seeing beyond abilities.  

Friends, tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life; a person who is empowered to make a difference in the world and not be without a voice in society. You are not living disabled, you are living.

To our supporters, join us in telling the world that you are accepting of people with disabilities. As our parents, siblings, relatives, spouses, children, lovers, coworkers, teachers, personal assistants, friends, and anyone else - you also have a role in our culture and life. And you can have an impact on the future if you demonstrate your acceptance to others.

Let's join together to:
Embrace diversity. Educate your community. Empower each other. Love life.

Emma went to her lung doctor today. Doing good. Made a few changes to her vent because she has grown a little bit. We dont have to go back for 6 more months. While we were there Emma got to see all the beautiful Christmas tree's. She is so excited about the holiday season, as are brother and sister. I can't believe its only 14 days until Christmas! We had warm weather last week, we had on shorts! But today was cold, didn't even get out of the 30's for highs. We put up our tree last night and Emma's purple tree we have had up since the day after thanksgiving. Its an angel tree, it has ornaments with all her angel friends and family names on it. Its beautiful. I'll get some pictures soon. Meanwhile, here is the pretty tree Emma fell in love with today.

Also quick prayer request. We are asking everyone to pray for our friend Tricia. She was on the list to get another pair of donated lungs do to her becoming ill and rejecting the ones she got a few years ago, she got sick and they had to take her off the list. Thur she goes back to the dr and they are praying they put her back on the list to get new lungs. Please join us in prayer that they place her on the list and that her wait isn't too long. You can learn more about her at : www.cfhusband.blogspot.com

Build a bear

The kids build a bears. I forgot to share the other day. Emma's is named Olivia Inez, its the black one with stars on it. She named her after her friend Livi that died in Aug from cancer. Ella's is the rainbow OU cheerleader one named Amy Junior for some reason. Derek's is camo bear with OU tshirt his name is Gregory. We had fun at the mall but my foot got sore. The day before I was in the ER and diagnosed with plantar fasciitis. Walking was not on my to do list, but we had to spend the day having fun. Cousin Elizabeth got Emma a bunch of new pretty earrings and Ella some legos. We ate Chick Fil A for lunch, and a big cookie from Mrs Fields for desert.

HAPPY BIRTHDAY EMMA AND ELLA

Happy Birthday Emma and Ella! 8 years old. You sure have grown fast.

Today they were on the Freedom 43 local news. I made a really bad copy using webcam pointing at the tv, they shared the above picture, the audio is the important part anyway. Thought I would share. http://youtu.be/MFH8WVo6U-s that is the link to see it on youtube.  *edit I just realized the new background has links in a really light color, just hover over the blank spot before "that is the link to see..." and it will kind of show up for you to click. Sorry need to do some editing in the template/code.

10-8-12

Can you believe Emma and Ella will be 8 on the 16th? It just seems like yesterday they were tiny little furry monkey looking babies in the NICU.

Have a big week planned. Its fall break Wed-Fri. On Thur we are going to Build a Bear in Oklahoma City. We are taking Emma and Ella's cousin Elizabeth with us, she is 17 and is excited to make a bear too, I can't make fun of her though, I am 36 and can't wait! I am lucky I was able to do some surveys and things online and get $125 in gift cards FREE! Oh I love free stuff. Might also eat at the cheesecake factory so we can get some birthday cheesecake.

Then Friday if the rain holds out for an hour or so we are going to get flu shots. Emma always does great with flu shots. Actually all the kiddos do. Derek just got his tetanus booster and was so brave.

Halloween is coming soon, not sure what Emma is going to be, probably a princess. Its so hard to get her something, she can't do hats very well in her wheelchair or anything with wings on the costume. Ella wants to be a vampire, no idea what Derek wants to be. Something scary I am sure.

Today Derek and Ella had to wear coats to school, it was only 35 this morning. Derek needed a new coat and I didn't know it, so he had to borrow mine, but that is ok, its a man's coat anyway. Think we need to shop soon. Emma is all cozy and still asleep this morning, wrapped up in her dreamsicle blanket. Oh not sure I posted what that looks like she got it from a group called lovequilts. I am sharing a pic so you can see how beautiful it is. It reminds me of Shevaun, my dear friend who died of cancer when Emma and Ella were a few months old, she used to collect those angels. Ella is named after Shevaun so she is always trying to steal Emma's blankie LOL.

Well that is the update for today, I'll need to go wake sleepy head girl up in a bit and tame her bedhead. Have a great day our wonderful friends!

Update on Emma's friend

Just wanted to update everyone to let you know that Emma's friend Olivia the one fighting  hepatoblastoma  went to be with Jesus this morning. Emma cried real tears when I told her, something she rarely does until she is in physical pain. We love Livi so much and we just ask that you uplift her parents in prayer and her big brother. We find it such comfort that Livi is now CANCER FREE and without pain in Heaven, and that she left this world in the loving arms of her mom with her dad and brother by her side. 

Emma is doing ok, sad but ok. Tomorrow Derek and Ella start school and I will be taking full advantage of my alone time with Emma to give her extra hugs tomorrow. 

We just want to ask everyone to pray for Emma's friend Olivia. Olivia has stage 3 hepatoblastoma. She has had a rough last few weeks, and her parents were asked to get hospice involved in her care. She currently has an infection she is fighting and needs immediate prayers for that. But also needs prayers for her over all health, her medical test numbers are not where they should be and her liver is very large and becoming painful for her. She is a miracle, we love her so very much and she is such a fighter. We hate to even begin to think this could be the beginning of the end for Olivia, so we won't! We also ask for prayers for her mom, dad and brother as you can only imagine the toll it is taking on them. Thanks so much to our faithful readers and prayer friends. Attached is a photo of Emma wearing her button's she got for Livi.

I had Emma some pads made to go under her trachs, they prevent rubbing, dirty neck and help with small leaks. Yes you can use gauze but they aren't near as cute! I'll be buying mickey button pads soon, maybe in matching patterns but maybe something knew. They are washable and made with bamboo cotton, which I love. We got them from http://www.patchworkpeddler.com/

August 14th 2012

Summer's almost over school starts in 9 days. Emma will be home schooled again but Derek will go to 5th grade and Ella 2nd in public school. Emma had a pretty good summer, although as of late its been spent inside just way too hot and dry out for her! We went to Greensburg KS to see family in July it was a nice trip. I thought I had posted pictures but apparently I did not, so I have included a bunch in this post. We went to the Big Well (worlds largest hand dug well) Museum and Emma got to see a huge space rock! A 1,000 pound Pallasite Meteorite one of the pics includes her by that. Also included are pics from around town, and of the memorial to those who died in the Greeensburg tornado, which I wrote about in this very blog. May 2007 an EF5 wiped the town pretty much off the map. Most importantly regarding the trip, she got to spend time with her Great Grandpa Donald Richards, who is a great man, and she got to see her Grandpa and Granpa Richards too and meet her twin cousin's for the first time. It was a fun trip, but so glad we don't vacation often it took a lot of packing and doing to go!

July 31, 2012

I went to Emma's nurse DeLene's memorial service almost a week ago. It was beautiful and I expected to gain some closure from going, but I really didn't. She left so suddenly without a goodbye, I just can't get over that yet. They say it was complications due to her being diabetic. Emma and I miss her, and I hope to do a ballon release for Emma, Ella and Derek soon so they have a chance to say goodbye. Its just too hot right now! 108 as I type this. I hope cooler weather comes soon. Here is DeLene's obit