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

Friend has gone to Heaven..

Just got word that Emma's favorite nurse (and mine) DeLene has died. There are no words I could write to say how sad we are and how much of an awesome lady she was. Please pray for her family.

Emma and I are using this blog to urgently request prayers for our friend Tricia. She is facing rejection of her donated lungs. You can read more about her here at their blog (read the story at the top for background) http://cfhusband.blogspot.com/  The words I need , to express the urgency of prayer we are asking for, they escape me at the moment, so I just ask please read their blog, prayer hard and ask God to heal her!

I haven't been updating as much as I should. Especially since Emma was in the hospital in April for treatment of what we thought were seizures but turned out they were spasms. It was just easier to update at facebook and make calls. I get burned out sometimes on updates I think. She was put on a new medication, which seems to have helped some. Other than that minor hiccup she is doing great. Enjoying the summer.

Hoping to take a trip to KS to visit family this summer. It will be Emma's first vacation. Ella's too I guess since they are twins ha ha. July 4th is the plan if all goes ok. Having family drive to get us since we still do not own a car, hoping to one day get a wheelchair van so we dont have to get Emma in and out of her wheelchair and pull her vent and other machines off of it. Riding the bus in town is easy since she can stay in her chair like that. Just had to get her a new car seat for the trip. its pink and its sweet. She is still so tiny. 7 years old and 28 lbs and only 36 inches tall. Her not standing and walking just keeps her little I guess. Still wearing a size 6 infant shoe and its big on her! My little bitty bumblebee.

So I will try as always to update as much as I can, I know I always promise that. But this time, I mean it. I promise *crosses fingers behind her back* LOL

Oh I attached a picture of my tattoo I got with tax return money, its a cerebral palsy awareness tattoo for Miss Emma, and my cousin's son Jarret who also has CP as well as many of our other brave little friends. Love to them all.

More family pics to share, except Darren and Derek since they tend to run when the camera comes out. All taken last night at Ella's daisy scout investiture. Cousin Elizabeth is also in the pics.

7 years ago today....

Seven years have passed since Emma first coded on us and died. God brought her back to us, and not a day goes by that I don't thank him for that. That night I witnessed a miracle, and I haven't stopped witnessing it since. Every day she is with us is a miracle, every day I can cuddle with her is a blessing.

That night 7 years ago I prayed for his help, for him to protect Emma. I sought the Lord, and he answered me, and delivered me from all my fears. (Psalm 34:4)  THANK YOU GOD! 

Despite the sick feeling I get remembering how hard that night was, today is a day of Rejoicing! A day to rejoice what the Lord has blessed each of us with... life! 


P.S. The above pic was taken of Emma and me last night at Ella's girl scout ceremony. 

I have just realized that I set an email with this blog and listed it on the bottom for contacts, I totally forgot I had it, so if you emailed me and I didn't get back to you promptly I am sorry. I am trying to answer things now and will make sure to continue to check our mail on a daily basis. You can write us at emmaandmommmy@yahoo.com. We love questions and comments, and don't forget you can comment here as well. I plan on updating the blog a lot more, its just been a dry spell where thankfully everything has been doing wonderfully at our house. No updates usually means no exciting medical news which is ALWAYS a good thing.

Something I found online and wanted to share....

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" 

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." 

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" 

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

 Priorities became properly aligned. 

People gave from their hearts. 

Those that were always too busy found time. 

Many began new spiritual journeys, some regained lost faith - many came back to God. 

Parents hugged their children tighter. 

Friends and family grew closer.

 Old friends got together and new friendships were made. 

Distant family reunited, and every family spent more time together. 

Everyone prayed. 

Peace and love reigned. 

Lives changed forever.

 It was good. 

The world was a better place. 

The miracle had happened. 

God was pleased.

I know this blog has kind of fallen off the map in the last few months, but really there hasn't been much to update. Plus we just got busy living life! I figured since today is the 7th anniversary of Emma's trach surgery I should get on here and at least mention it.

All is going great here, Emma's doing wonderful, everyone in the house has had the stomach flu twice in the last month, except Emma, she just keeps amazing us all with how healthy she is. We put up her little Christmas tree the day after Thanksgiving and just put our big one up the other day. I don't have pictures of our big one yet, but am sharing Emma's little tree. You might remember it from when she had her ulcer and almost missed Christmas by being in the hospital. Nanny brought it to her. This year we switched out ornaments and she got a butterfly topper for it! We also made a picture frame of some of the kids we know that are no longer with us, that way we can remember them. There are so many others sadly, that we could have included. Please pray for the families that have lost their little ones. Christmas is always a hard time.

I know different....

A friend made this for me and I love it so much I had to share, click to to make it larger so you can read it all.

I haven't updated in ages, and really should have but life just got busy. So quick update. Emma and Ella turned 7 in Oct. they had a big party and had a cake donated by Icing Smiles which is an organization that helps kids with disabilities or illness get cakes. It was an awesome cake, wizard of oz themed. Halloween has also come, and Emma went as a bride, Derek went as ghost face from scream, and Ella was a cowgirl. Here are some random pics for you to see, while I think of a few more things to update on in the next few days.  The rainbow cupcakes were made by Emma's Nanny and everyone thought they were sooo cute!

HAPPY FATHER'S DAY TO ALL THE DADDY'S READING!

Its been a miserable 2 days. Our ac broke yesterday and it will be tomorrow before its repaired at the earliest. Emma has her very own fan pointed right at her and I have been cooling her down with cloths frozen in the freezer. She is doing fine but the rest of us..yuck! She lost another tooth last night!! The tooth fairy brought her a golden dollar. Tomorrow her Uncle Adam is coming to town, he recently returned from being overseas for the army. Can't wait to see him!

Today we are just hanging out trying to stay cold and watching netflix. No big plans for fathers day, just having fun being together.

Oh Ella wanted me to share her new pink glasses and short hair cut with everyone. We got it cut about the middle of May I guess. Here she is. 2 pics of her in her pool too that I loved. She sure gets jealous if I don't share her on the blog too!

Survived one heck of a hailstorm here in Norman last night. Can't say the same for my memorial garden for Emma's boyfriend Daniel, or my pepper plants. They are all messed up. The angel I had in Daniel's garden lost her wings, and the flowers may be a total loss. We had just under ping pong ball size hail that came down for about half an hour and 80mph winds. We lost a section of fence, but have tied it up until they can come repair it. It was ankle deep through out the yard and drifts of over a foot. Its 430 the next day, almost 24 hours later and I still have drifts in my flower bed! Lots of damage all over town. Walmart lost skylights, tons of power poles down, windows out and signs down all over town, roof damage to homes. But we managed to end up pretty good more or less, had to get the kids away from windows quickly. It was so loud I thought the roof was going to give!

Not much else to update. Emma is enjoying the summer, Derek and Ella too! Here is a pic of Emma I took not long ago.

Emma is doing great, but here's a medication warning that is important

Sorry no update for a while, nothing exciting going on, Emma is doing wonderful as always! I did want to post a medication warning from a friend who's son got very sick because of singulair (used for asthma or allergies) It was such a hard time for their family I just had to pass it on----

Please please read this and send it on to anyone you know who is taking or has a child that is taking Singulair.  It's very important!

My son Tyson Sawyer's sweet happy demeanor changed drastically Friday night, April 22nd.  He became extremely anxious, crying and screaming with no reason why. 

On Saturday, his behavior continued and we took him to the emergency room.  While there they decided that his actions were do to his having a tiny hair in his ear.  After irrigating it out, they sent us home.  That evening, his anxiety heighted to the point where he would not let me (his mother) close my eyes and he would not go to sleep.

The next morning we again took him to the emergency room.  By now, he was flitting his eyes around and screaming as if he was seeing something terrifying.  The doctors did a CT scan to see if he had a brain tumor or a bleed or maybe a stroke to be causing this behavior.  When it came back normal, they sent us home with a prescription for an anti-anxiety medication saying he was just having anxiety attacks.  That night was no better.

On Monday morning, he was admitted to the hospital with severe anxiety and hallucinations.  Doctors were baffled as to what was causing this behavior.  Over the course of a few days it got worse and worse to the point where he was hurting himself--biting his fingers, banging his head, and digging into his skin with his nails.  What ever was going on with him had become dangerous to his well-being and we had the horrific experience of having to put our 4 year old son in restraints tied to the hospital bed.  Infections and toxins were ruled out with several different tests.  Brain cancer, stroke, bleeds, epilepsy...all ruled out as well.  We went through hell for 7 days trying to find out what was torturing our baby.

Finally one of the doctors found that Singulair, a drug our son has been on for 4 years now for asthma and allergies, can cause anxiety, hallucinations, and self-harm behaviors.  So stabbing into the dark since its been 4 years of no such side effect, they decided to take him off of that.  With in 72 hours, our son was back!

I'm writing this now to tell anyone and everyone to get off of Singulair!  It is extremely dangerous.  This "side effect" is not widely known and the doctor who prescribed it didn't even know about it.  After doing some research online, we have found multiple accounts of this exact behavior from other Singulair users, many who had been taking the drug for upwards of 2-7 years and just developing the side effect...and sadly, even some that have commited suicide or cause great bodily harm to themselves while on this medication because no one knew this stupid drug was causing this.

PLEASE take your child off this drug, stop taking it yourself, or if you are not wanting to stop at least be aware of this and watch for this side effect...and pass this on!!!!  Help us tell the world so it doesn't happen again!

**Here's another account from a family who prayed for us during this horrific time.

So very thankful to have you in my life, eventho it's just through facebook! Because of you sweet Ty, you've brought this horrible drug to my attention. Since my son was almost 2 years old he's been taking Singulair. He's now 5 years old and we've always thought that his behavior was just him..after all, thats what his doctors told us. Boy were they wrong, Seth has now been off of Singulair for 6 days and has been happier! He's smiling more, listening better, more energy, not as aggressive..just acts better! He still is scared of being alone, but I'm LOVING the new him!

Wildfires

Very scary day on Friday, we had a grass fire directly across the street from us, the road is the only thing that kept it from coming into our yard. It was terribly smoky, I had to pack up all of Emma's gear quickly and get out, thankful my sister came to get me and we went to pick Ella and Derek up from school. Their school was not letting walkers leave. We are all ok, except Mom has a little sore throat from breathing the smoke. The entire state of Oklahoma seemed to burn yesterday, we were very lucky, many people lost their homes, and I pray for them.

Here is a pic of the Emma's Mimi took from our driveway. At the time of the picture the fire had been put out close to the black fence. It burned up to the black fence, and further out past the fence on the left hand side by the trees. The people in the picture are standing in our front yard. The picture does it now justice, and by the time this was snapped much of the smoke had cleared. I even had soot falling on me in my yard! They say someone threw a cigarette down!

Sissy's glasses

For all of those interested here are pictures of Ella with her glasses and with her eye patch on. She is doing very well with them and we just thinks she is so darn cute! Not the best pictures but we are so proud she is doing well with them, despite breaking the glasses already, she is so rough on things. We did get them fixed and have ordered her a new pair as a back up, they are memory plastic so they will bend without breaking as easily.