Emma's Journey

2012-01-27T12:28:00.000-06:00

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....

2012-01-27T09:18:00.001-06:00

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.

2012-01-25T07:49:00.000-06:00

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.

2012-01-17T21:22:00.002-06:00

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.

2011-12-13T08:49:00.000-06:00

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....

2011-11-13T13:41:00.001-06:00

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.

2011-11-04T18:35:00.000-05:00

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!

2011-06-19T12:23:00.000-05:00

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.

2011-06-15T16:43:00.000-05:00

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!

2011-06-15T16:41:00.000-05:00

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

2011-05-03T07:09:00.000-05:00

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

2011-03-13T01:06:00.000-06:00

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

2011-03-04T20:29:00.001-06:00

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.

Update on brother and sister's school happenings

2011-02-18T07:52:00.000-06:00

Last night we went to parent teacher conference, my sister came and watched the kids for me. We did Ella's then walked to get an icee and then went to Dereks. Here is what I found out:

Ella is branching out and playing with more children, not just her best friend anymore. She is learning more numbers and letters and her teacher is excited to see if her reading gets better now that she has glasses and can see. She is a good girl in class and is very well behaved.

Derek is his teacher's little helper. The class printer is broken so he runs to another class to get printed things for her. She said he does lots of stuff for her and that if she let him he would probably teach the class! LOL He now does all his work AND turns it in, he used to hide his work in his desk! He tested on a 7th grade level for reading and 5th for spelling, even though he is in 3rd grade. His teacher said he goes the library almost daily, the librarian told me the same thing, I kind of already figured that. His teacher said he is doing awesome. They take standardized tests in April which will hopefully help place him in Gifted and Talented if he does well, since the gifted and talented test alone does not for some crazy reason. They tested him 2 times a year since he started school and every teacher is shocked he hasn't been accepted to the program yet. So the CRT tests will help with that. He is also well behaved and the teacher really seems to enjoy having him in class.

Emma got to sit with me and talk to the teachers, they both thought she was cute, despite the drool that kept running out of her mouth. She was like a faucet yesterday. She made a promise not to tell brother and sister anything the teacher said that might be "bad" but they had no bad things to say!

Emma got new hair bows from Nanny and Poppy for Valentines and she wore a red one yesterday. Today is shopping day so not sure what bow she will end up wearing, she looks so pretty in all of them. Every time I take her out now people flock to us to look at her and tell me how cute she is. What can I say, I make cute babies. Oh yea I forgot Emma is a big girl now. We are trying to move away from cute "Baby" type stuff because she is 6 now and getting grown up.

Thanks for reading, I will keep trying to find things to update about.

Lost a tooth and pics of Ella's glasses

2011-02-16T09:28:00.000-06:00

The tooth fairy came to visit Emma last night, she lost a molar yesterday while I was cleaning her teeth. It just sort of popped out. She was happy to find a dollar under her pillow this morning. Yesterday the Respiratory Therapist came to check her vent and had to switch them out (they do that once a year for maintenance reasons) She told us she would get Emma a backpack for her ventilator that would go on her wheelchair, that will be nice since it will hold all the tubes and such out of the way, I sometimes smash them or roll over them with her chair OOOPS!

As promised here are pictures of Ella in her glasses. My sister took them on her cell phone, and Ella was none to thrilled. She was all sweaty from playing at school, and the pictures make her one eye look really big, while her glasses do make her eye slightly bigger looking, its not near as bad as this picture makes them look. Plus her glasses were a bit crooked looking that day, we have since adjusted them. You get the idea though, they are brown with a tiger print on the inside of them. She is doing well with them, her eye patch should be here later this week.

Church and prayer request

2011-02-10T12:59:00.000-06:00

Since losing our internet a lot of changes have happened at our church here in Norman. Our lead pastor and his family left, and we are moving to a new building! They moved on to bigger and better things and we are so happy for them. We ask that you please pray for our lead pastor Justin and his wife Sarah, they moved to Kansas to start a new church, taking with them their 3 small children. We ask that you pray they have great success in their new venture and that God will provide them all they need to begin the new church there.

Next week should be our first week in our new building. There were some financial issues and we could no longer stay in our church building so we are moving to another church which has upgraded to a new building so we get their old one to use until its sold. Its a beautiful location, and we are happy to be staying with Generations church through the move. We also request that prayers be said for our church so it can thrive and get out of its debt issues. Its a great ministry and even though its fallen on some tough money times it has not faltered at all in providing a wonderful spiritual experience for all those who attend. We love our church and our church family so much, its become a big part of our lives and its made us super happy to get to do so. Emma loves it there, and I can't wait to take her to the new building so she will have new things to look at!

No, we didn't fall off the face of the planet

2011-02-10T12:52:00.000-06:00

Welcome back readers, sorry we were gone for so long, but in Sept we had to drop our cable service to save money, and we are just now getting back on.

As some of you know, Emma's Daddy lost his job in November of 2009. He spent most of 2010 unemployed with the exception of a few temporary jobs. It was a very hard year and we would have never made it through with out support from our friends, family, and church. Thank you! In December he started a permanent job as a dishwasher at our local hospital, so far he likes it and its been a true blessing that he found it.

Since Sept Emma has been doing well. She got another nasty leg infection in October but quickly got over it. She had a wonderful Christmas. Not a lot of news to share about her, she is just growing and her hair is getting longer.

Her big brother Derek just recently got straight A's on his 3rd grade report card and we are so proud of him. He is almost as tall as Mom now, just a few more inches!

Twin sister Ella received a Kiwanis award at school for being a Terrific Kid because she was inclusive. We were proud of her and Emma had fun going to the school to watch her sister. Ella also just got glasses this week and will be patching her eye too. She has Amblylopia or lazy eye. Hopefully in the next few years it will correct itself and she can go on with her life glasses free after that.

Above are a few recent photos my sister took of the kids, some at the awards for Terrific Kids and Derek at the National Weather Service's festival in Oct sitting in the Dominator from tv's "Storm Chasers", thought you might like them. I will get some pics of Ella in her new glasses and patch soon. Keep reading for more updates, I will try to do so frequently now that we are back online.

8-24-2010

2010-08-24T10:49:00.000-05:00

Wow its been a long time since I updated here. Not much going on with Emma she is just hanging out enjoying life. Derek and Ella started school, Derek is in 3rd grade this year and Ella is in all day Kindergarten. That means its just me and Emma all day long! All the fun stuff we can do without interruption now. I am researching things to hopefully start music therapy with her soon, she loves music and I figured it would be a good way for her to learn things. I will be homeschooling her so I figure the more things I can do with her the better. Here are two pictures I took of Emma yesterday, hope you enjoy them. I will try to update more as we home school and look for new ideas on things to do with Emma, if anyone has any therapy tips or ideas for me let me know! She can't really use a pencil or talk but she hears well and learns though touch I think, and of course we are working with her physical therapy and trying to keep her muscles as lose as we can. She likes to get her massages and work out every day with me, its fun for me too!

July 10, 2010

2010-07-10T19:52:00.000-05:00

Not much going on around here. God has blessed us with a very uneventful year with Emma so far, which is good considering the way last year went out (the ulcer hospital stay).

Emma got a afghan today from heartmadeblessings.org it was requested by my sister, Lisa. I love this program and thought I would share that link with all of you. Their site says: Heartmade Blessings is a world-wide group of volunteers dedicated to providing hand-crafted items to those people suffering a loss, tragedy, or going through a rough time that need to be reminded of the simple fact that people care.
Heartmade Blessings come from all the wonderful people who donate squares for afghans and bearghans. They are also made possible through the efforts of the warm, caring people who donate their time in assembling and organizing the distribution of these items to those in need. We truly believe these people are nothing short of a "blessing" themselves.

So if you know someone who needs a little comfort check out their page, and if you are crafty and can help make afghan squares please check out how to volunteer your time. Its a great group. We have sent afghans to our friend Jaye and to Emma's boyfriend Daniel before he passed away. We have been lucky to get this beautiful one today and a bearghan for her when she was little.

The summer has been rainy and hot here so not many out door things going on for Emma, tomorrow we will be walking to church, she hasn't been in a while due to various reasons I have had to leave her at home, I am sure she will have to much fun getting back.

June 7 2010

2010-06-07T14:15:00.000-05:00

Finally some new pics to post! And a quick update. We didnt make it to our March of Dimes walk back in May. Rest assured your donations did, but we stayed home. It rained a lot and they moved the walk inside to a small gym, with a DJ and music and lots of noise and people. We really worried it might set off Emma's seizures so we did not go. Not to mention we would have had to take the bus in the rain way across town and risk getting her vent wet.

She is doing great! No seizures, no icky sicky's lately. Just hanging out with brother and sister for the summer.

Yesterday we went to cousin Killian's first birthday party. He turns 1 tomorrow. That's where are pictures are from. I had to include a few of him on the blog, because he is adorable! It was a very nice party and we all had a great time.

That's the update for now, nothing earth shattering to tell just enjoying life.

March of Dimes

2010-04-12T09:36:00.000-05:00

We are raising money again this year for the March of Dimes. Our walk is in 33 days and we are still in need of more donations. Can you help? Even the smallest amount will help us. As you all know, this is something that is so close to my heart as I will be walking in honor of Emma and Ella who were born 9 weeks early. Again I walk with a heavy heart in memory of my nephew Gabriel, who went to heaven before we even got to play with him, on June 9, 2004. Please help if you can or pass our link along. God Bless!

Easter 2010

2010-04-04T15:19:00.000-05:00

"For this reason the Father loves Me, because I lay down My life that I may take it again. "No one has taken it away from Me, but I lay it down on My own initiative. I have authority to lay it down, and I have authority to take it up again. This commandment I received from My Father." --John 10:17-18

Happy Easter everyone!

Church was wonderful today, the kids had tons of fun and got lots of candy filled eggs and learned about Jesus! We then came home to hunt some eggs of our own. Ham is in the oven and dinner will be awesome, it smells so good.

We are so blessed with our friends from church. I won't get into details, but we were given something very special from another church goer today, something that will help us, as we go through a rough patch in our financial life right now. Thanks be to God, his work is being done through his people.

Above are some pictures, Ella was pouting during much of the egg hunting, Emma got an egg she wanted! I did manage to snap a few that were worth sharing.

Wishing everyone a wonderful Easter, filled with love and family as we honor the one who who makes everything possible...

March 20, 2010

2010-03-20T13:12:00.000-05:00

Ella has been a very busy girl lately. She went a few night ago to the ER with an ear infection. Its funny having her in there and not Emma for a change. She was really brave. She is doing better now, though she still coughs a bunch at night.

And the best news to share...Ella's wiggly tooth finally come out this morning! No more being jealous of Emma. This is Ella's 2nd tooth to lose and and she is excited about the tooth fairy coming.

It is the first day of spring, and despite 70 deg. temps yesterday we woke up to snow and wind. We have maybe 2 inches of snow so far and are supposed to get 4 to 8. This sure has been on crazy year for snow. Hoping tomorrow we can get out and make a snowman. Looks like just Mom for church tomorrow, no way Emma's wheelchair will go in the snow, and I don't want Ella and Derek all wet and icky when we get there. Hopefully they will still have church, and not cancel on us.

That is all for now. Emma is doing great, just hanging out with her brother and sister, enjoying the end of spring break and watching the snowfall from a nice warm house.

The toothfairy is coming! YOOPIE!

2010-03-06T21:07:00.000-06:00

Emma is getting another tooth fairy visit tonight! 6 total, as you remember back on May 25, 2008 she lost 5 in one day! Her tongue pushes on her teeth so they get super lose. This one feel out when I was brushing her with a mouth swab. She didn't even notice.

Ella is kind of mad, she has had a "wiggler" for about a month, and its still not out. Of course she doesn't like to wiggle it much either.

Not much else going on. Up coming dr visit on March 18. Its for nutrition clinic to follow up since they changed her food during the whole ulcer problem. I think it will be fine, and we will have her weighted I imagine so it will be good to see how much she has grown since Christmas time.

I went to a women's retreat for Church over night last night, and let me tell you, Mommy needed that! It was a nice break but I sure missed Emma, Ella and Derek.

God Bless for now, time to go tuck this tooth safely under Emma's pillow.

2010-02-26T07:13:00.000-06:00

As a dear friend pointed out, I should really update this blog! Sorry for the lack of writing but not much has been going on. Emma is doing the same as always...wonderful! She has just got over the little cold she has and is hoping that the snow that is falling today will melt really well so she can get pushed to church on Sunday. I think it will be fine to go on Sunday, most of the sidewalks are snow free. I will be so glad when winter is over.

Waiting on a call from one of Emma's doctors, wanted to get her in for some xrays. I have been noticing the curve in her spine she was getting is more curvy so I think its time to do something about it. Its very common for children in wheelchairs and who can't move around well to get scoliosis. We just want to make sure we keep it in check.

Here are a few recent photos of the girls and even one of me (in case my readers forgot what I look like)! None of Derek, he still runs when I pull the camera out or pop up the webcam. Also included is one of Emma's new doll. She got it for Christmas from Uncle Jay and Aunt Kim and I put a trach in its neck so it will look just like Emma, the dolls name is Ava.

2010-02-09T08:30:00.000-06:00

Just a little update, not much going on around here. Sunday brought a return to church for Emma since all the snow had melted and her vent battery was replaced. 2 weeks ago I had her all ready to go out the door when we realized her vent battery was completely dead and broken! They replaced it quickly but she still missed.

Sunday also brought super bowl Sunday. We aren't big football fans in our house, unless its the OU Sooners, but Emma sat and watched most of the game while everyone else in the house did other things. Her eyes tell me it was a good game.

Emma is doing pretty good with her new brand and size of trach tube. She does seem to have quite a bit more secretions we have to suction out, but I am not sure if that is due to the tube itself, or the fact that brother and sister just got done having colds, so maybe she has some cold symptoms too.

Ella has been up sized out of her toddler bed and into a twin size bed. A move we really tried to wait until last min. to make since the girls share a room. Poor little Ella's legs finally got to big for her little "baby" bed and she got a real "big girl" bed. Their beds are in an L shape in their room, so we have some floor space left, its not as crowded as I feared it would be but its still a big change. Ella picked out a striped bedset that is really bright and she loves it. I told her she could have any one at walmart and she picked that over tinkerbell or barbie, what a big girl!

It is really cold here and we are longing for spring and park visits, Emma wants to wear her famous hippo croc shoes again and play outside. We had some snow yesterday but nothing stuck, thankfully.

That's the update, see I told you there wasn't too much going on around here.

Jan 30 2010

2010-01-30T19:43:00.000-06:00

What an ice storm we got on Thur and Friday! We spent all day Friday without power, and just as we were leaving to go Grandmother's house the power company drove up and said it would only take 20 more mins! We were so glad to get our heat back on and power for all of Emma's equipment. We got about an inch of ice followed by 7 inches of snow. So no church for Emma tomorrow, because it will be too messy for me to walk her, but the plan is for me to walk in the snow and go, we just started a great series and I don't want to miss any of it.

Our praying mantis died this week too, she was old. The kids buried her and made a really neat little grave in the backyard

Posted above for your amusement are some of the pics I took around the neighborhood, plus one of the little grave we made for the mantis. The tree that is on the ground, is at the kids school.

2010-01-27T09:35:00.000-06:00

5 years ago today, we had Emma baptized. While I have talked before on this subject, I can't let today go without mentioning it again. Never grew up believing in infant baptism, but just felt after almost losing her the night before that it was the right thing to do. Notice how yesterday I did not post a remembrance of almost losing her the first time she flatlined on us at home, Jan 26, 2005. Its because I no longer want to dwell on the sadness that night put into my heart, or the fear that it caused me.

Jan 27, 2005 when they sprinkled Emma's head with water and baptized her in the name of the Father, the son, and the Holy Spirit, it not only washed her sin (not that she really had any she was so young and innocent, the only sin she had was being human and Jesus already wiped that sin way for her on the cross) it washed that part of her life away, the part of fear. I had given her to God in prayer and with a sacrament. I prayed God would take her, he was her child, not mine and only he could heal her. Which he did! Hallelujah!! She may not be like other children, but he healed her, and in turn he healed me too.

That day I basically had her baptized not because of her sin, like I said she was a sinless child, but as a sign to God that I would raise her to be Christ like in her ways, and to teach her of him. I have tried hard to live up to that, we don't always go to church, sometimes its physically impossible for us to walk, in the snow or cold, but I talk to her every day about God, we read our bible. We have been so lucky to find a church that works for us, Emma loves her music, and her friends. She sits and listens, I don't know how much she actually understands, we will never know. But I always kiss her and am all smiles at church, because I know that God is sending his love to her, and that she might not understand the sermon that day, maybe she does? But God is sending her a special sermon in her heart that is only known to her and him. He is always with her.

Some people ask me how I can believe in God, especially after having a child that has something "wrong" with them. My belief of him has been in me my whole life,from an early age I knew God was real and I was his faithful servant, but if I ever needed proof I just have to look into those big brown eyes of Emma's and know he is real and he is good. He has blessed me with so many answered prayers and miracles in regards to Emma, how could I not believe? Her being here is proof in itself. I am so undeserving of his love and answered prayers, but he has always been there with me and he is always with her. He is with all of us, we just have to open our eyes and see him, and open our hearts to receive him.

2010-01-26T20:38:00.000-06:00

Emma went to see her lung doctor yesterday for a check up. He changed some settings on her vent and ordered a new kind of trach for her. The settings for those of you who understand vent talk were changed from a breath rate of 20 to 18 and tidal volume was changed from 130 to 145. This was done because she has grown some and it needs to be changed as you grow.

He also ordered a bivona trach for her, which is a different brand than what we used before. It has a cuff inside of it, so we can inflate it when she has an air leak, she has had a big leak for sometime now, and while its posed no problem, its quite loud and annoying and could be a problem in the future so we are fixing it.

The trip to Children's hospital to see him went well, we rode the bus and Emma liked it. His office is now all the way up on the 9th floor in the new OU Physican's center and its a very nice new building. Emma liked looking out the windows, we could see almost all the way to our house! I did not like it much, it made my vertigo go wacky in combination with riding the elevator up.

Please say a prayer for us to avoid power outages. Thursday is going to bring a very bad winter storm to our area. It could be worse than the ice storm we had way back in Dec07 where we lost power for a week and had to stay at Emma's Grandmother's house. Not a fun time for anyone involved. This storm looks bad, and we ask that you pray for the safety of all our friends that will be in its path, may they all stay safe and warm.

Ella and Derek were sick from school today, they have colds. We are hoping they don't pass them on to Miss Emma.
That's the update for now folks. Emma sends her love to each and every one of you and appreciates you taking the time to learn about her.

Update Jan 9, 2010

2010-01-09T22:18:00.001-06:00

Just a little update to let everyone know that Emma is doing very well since coming home from the hospital. No more bleeding, if that happens again its back to the hospital, but no reason to think it would since she is healing up from those ulcers nicely thanks to her medicine and new formula.

We haven't been able to get to church lately and will probably miss tomorrow too. Its just too cold to walk, we had wind chills well below zero this week. I sure am itching to get her back there though to see all our church friends. Everyone was so helpful while she was in the hospital.

Today cousin Killian came to play. He is a bit grumpy because he is teething. But he loved laying next to Emma and he finally dozed of while I was holding him for a short little nap. Above are some pictures I thought you might like of him and Emma and some cute ones of just him. He is so very sweet.

For those who are curious Derek and Ella are doing great too. Derek is enjoying cub scouts and will be working on his pine wood derby car soon. Ella has another tooth that is loose. The first one she lost is already growing back in, she is so proud of her "big people tooth".

Have a blessed Sunday tomorrow, will update again soon.

2009-12-31T16:14:00.000-06:00

Wishing all our friends and family a very happy New Year. May the new year bring you many blessings, and much happiness! --Emma and Mommy

2009-12-27T17:29:00.000-06:00

We had a great Christmas. The kids got lots of gifts. Derek's favorite is his guitar and skateboard. Ella likes her easy bake oven and Emma loves her new mp3 player and sound machine.

On Christmas Eve we got about a foot of snow, a rare amount for us. We built snowmen today. Here are the pics, and I will update more in a bit its dinner time but Grandpa and Grandma really wanted me to get the pictures up. Pics are from the snowstorm, the snowmen, the kids kissing their snowmen which was Derek's silly idea, Christmas random shots and one big bubble pic of Emma, she sure had a lot of bubbles in her mouth! Love to you all.

There's no place like home...

2009-12-22T08:39:00.000-06:00

Home at last! I am so happy we finally have Emma home. We got home around 5 last night. Emma slept very well in her very own bed last night and loved the fact that no nurses can in the room every 2 hours!!!

The problem was that she had 5 ulcers in her stomach that bled. We had no idea until she started passing blood in her diaper that she had ulcers. Her electrolites and hemoglobin were way out of whack when she got there and they dropped a few times during the trip too. She had 3 blood transfusions , lots of thanks to the 2 A positive and one A neg. donors that saved my baby's life!

She had 2 failed attempts at starting a picc line for the many blood draws she needed on a daily basis, apparently she has flat veins that round caths don't like to go in! So she had a central line put in.

She had 2 endoscopies and a colonoscopy. They took some cells during the tests and think she has a problem with her milk she got in her feeding tube, she apparently has a allergy to the type of protein in it and that is what caused the ulcers. Her seizure medicine she spent years on also causes ulcers so we are off that now, and on no seizure meds as of yet, they want to see if she she managable off medicine. So far so good.

She is on a new formula and 2 medicines and will be pretty much forever I guess. Prevacid for acid control and Carafate to coat her stomach.

We did a lot of praying that we would be home for Christmas and I am beyond excited to have her well and home now. This was the sickest she has ever been in her life. They said we can pretty close to losing her those first few days, due to her hemoglobin dropping so low. But the little miracle she is, with all the courage and strength she carries around, she showed those doctors a thing or two and has more or less made a full recovery!

Thanks for all the prayers you have sent, and to our family who helped us during our stay. Thanks goes out to those from church her brought food, and visited and prayed for us. That love really helped keep our spirits up. There isn't a thank you card big enough for all that was done, and we are so very grateful and humbled by the outpouring of compassion. THANK YOU!!!!

Update

2009-12-13T11:48:00.000-06:00

Sorry I didnt update as I said I would,yesterday and the day before were kind of busy and I didn't make it down to use the computer. Today Dad is here and I have the netbook here for a while.

Still bleeding, and still no new answers. They discountined her seizure medicine because it can cause ulcers, maybe that is our answer but they don't think so for whatever reason.

Friday we got an ultrasound of the kidneys done. They look fine, as do the spleen and liver, which they had tested earlier in the week.

Her heartrate was high again yesterday, but labs all look good. They wondered if she was in pain, but she seemed very content so I don't think she was. So today we are doing a CT of tummy and intestines (I think both spots), we are just waiting for them to take her down and to give her some barium

Tomorrow they will be doing a RBC nuclear scan or Red blood cell scan. If her bleed is big enough it will show us where its at, but both the doctor and the radiologist think her bleed is small, so doubt it will show much. The next step will be to scope her again down the mouth and check to see if the ulcers they found her tummy or bleeding, if not they will go into the intestine to look, which is a surgical thing. We have wanted this done all week and frustrations are high because every day she has bloody diapers and everyday we get told to wait and see if the medicine they have coating her stomach works.

Please pray we will get answers soon so we can go home.

A very sick girl...

2009-12-10T14:30:00.001-06:00

Emma is at Children's hospital in Oklahoma City. We have been here since Saturday. She has been admitted with a GI bleed, which is something very new for us. A lot to update on what has happened the last few days, will have to try to be as simple as possible.

We were admitted following a bloody diaper at home, she has had several since then. Over the last few days she has had 2 blood transfusions, an endoscopy and a colonoscopy, which are fancy names to say she has been looked at down her mouth and up her bottom. They found 5 ulcers in her stomach, which were not actively bleeding. They have medicated her to see if that helps, but today and yesterday she had bloody diapers again, so there is a chance some of the ulcers are in her intestines and they will have to go in and operate. As of now its all "wait and see if she has bloody stools some more" which is really frustrating to say the least. They did biopsies during the scopes but the results are not back yet, they don't expect them to show anything but they are done as a precaution

She had a central line placed yesterday because they are taking blood ever 6-8 hours and need to have good access. They tried to start a PICC line two times and could not. You can google those terms, if I just completely lost you. I am sorry I am just in hospital mode language right now.

We just want our girl well, if she could be home in time for Christmas that would also be great. No children under 12 can enter the hospital due to Swine Flu fears, so Ella and Derek have not seen their sis all week and I hate to think of them not being with her on Christmas, let alone how I will split my time between here and home.

I just found a wonderful room called the "Ronald McDonald Family room" here in the hospital where I have access to a computer so I will try to update as much as possible. I plan on daily updates, more if possible.

Our Church family has been great, with visits to see her the last 3 days and a group of ladies that will be bringing meals by to Daddy and the other 2 kiddos. Its nice to have them there for support, along with our family.

Immediate pray needs are 1. Make the bleeding stop 2. Let us get home for Christmas and 3. That her blood work and electrolites stay where they need to be so we can avoid more transfusions.

Will update as soon as we have some more answers.

Nov 13, 2009

2009-11-13T09:54:00.000-06:00

Parent Teacher conference for Derek and Ella was this morning. Overall, things went well. Apparently I have 2 smart kids, well mannaered, but one is kind of messy, that would be Derek. He gets that from me, I was the same way as a kid. I was hoping my ability to keep house neat as a grown up and suchwould rub off on him, but apparently not.

Since Emma doesn't go to school, I had a confrence with myself. It went something like this. TeacherMe--Emma is doing well with her stretching MommyMe--That is great to hear! TeacherMe--yes but she is so tight on that right side in her arm and her knees need work MommyMe--Oh ok I will work on that, since you guys only work an hour or hour and half a day, I am sure I can find time in my super busy schedule to work in more time. HA HA.

Actually, to update Emma is doing very well, she does tend to stay pretty tight with her right arm, and her knees, but her hips are still doing great since surgery. She learned a new skill, sometimes but not all of the time, when I am kissing her cheek she will turn her head and point her mouth at me and kiss me back, she doesn't puker up just sticks her mouth by mine. Its slobbery and icky wet but its a very great kiss, one of the best kisses ever. She still doesn't make a lot of purposeful movement on her own, and that is one thing she does do so its excites me a great deal. Of course when I want to have her show someone like Nanny or Mimi she won't do it! But dad has seen it, and if I ask really nicely she will usually do it, I will try to make video of it. She spends her days watching tv, listening to music, or having Mommy move her around and read to her. I just got her a new book at the book fair from school, its called "Emma's Very Busy Week" it looks cute.

So no big update, but wanted to post something so I could attach some new pictures of Emma, and a few of Ella I took and love. They are both growing so big, I can't believe they are 5!

Random pics

2009-11-05T08:53:00.001-06:00

Some random pics as of late. Emma on her birthday sleeping, the cake Ella made them, Ella and Emma at the school play ground, and finally my new fave pic of Ella. She is holding cousin Killian and made him go to sleep, what a little Momma. Don't forget to see the pics bigger all you have to do is click one!

Finally an update and Halloween pics

2009-11-05T08:46:00.000-06:00

Please forgive my neglect of the blog recently. Not much in the blogging mood, too busy enjoying life, which has been very good to us recently. Emma is doing fabulous. No sicky icky germs as of yet, even though a few weeks ago the entire house was sick. All the kids have had the seasonal flu shots as well as the first dose of the h1n1 vaccine. No tears at all either time for any of my 3 big kids, I was so proud.

We are greatly looking forward to Thanksgiving this year, if plans go right Emma's Aunt Adam will be in town to visit. He as you know is in the Army and is stationed in Arizona right now, but will be making a trip to Afghanistan early next year as it stands right now, this after just getting back from Iraq earlier this year.

We love fall time anyway, will be looking to change the blog layout soon, so that we look more fall like.

Halloween went well. We went to Fall Fest at our wonderful church. Derek was a skeleton, Ella dressed up like Hannah Montana/Rock star and Emma wore a cute little pair of pumpkin pants and a shirt with a little girl witch on it that said "too cute to scare" it was cute. We got lots of candy, got to have fun and see our friends, and learn about Jesus.

I will be posting another post shortly with some random pics of the kids. My laptop was not working very well the last month or so, but thanks to Darren it is now, and I can post pics again!

God Bless all our dear friends, we hope fall is bringing good things to you and yours.

Birthday, flu shots, and being sick...

2009-10-19T08:31:00.001-05:00

Derek, Ella and me (Mommy not Emma) have been passing around some sort of sick colds or something for about the last 2 weeks, which is why no updates for a while. Mommy was just too tired! Everyone is doing better, but Derek stayed home from school today. He went on a cubscout camp out this weekend, because he was feeling better and got to feeling worse from sleeping out in a cold tent. He also ran into a tree and scraped up his face pretty bad. Thank God Emma has not gotten super sick, but has been a tad bit gunkier.

Last Thur we all got seasonal flu shots, Emma did great. Ella ran a little bit and we had to chase her down and hug her tight for her shot, but in the end she never did cry over it. Derek sat down and took his shot like a man. Didn't even say ouch or anything.

Friday the girls turned 5! Can you believe it? My little miracles made it to 5 years old, there were so many days back in the NICU that 5 years seemed impossible. I am so proud of them both. They got some great gifts and love them all.

Since the first week of Oct, I have been fighting nerve pain/palsy in my left hand so typing is no fun to me. Imagine your hand feeling like its constantly asleep and when you use it, its all pins and needles. I am doing home therapy on it and trying to rest it, hopefully it will heal on its on.

Please everyone pray for Emma's Aunt Lisa aka Mimi. She was in the ER last night and her blood work came back saying gallbladder problems, she is set for an ultrasound in about 2 hours to figure out what needs to be done and how bad it is. We are hoping she doesn't have to have surgery, and praying her pain stops soon. Will update you all as I can on that.

Bless you all for hanging tight and still reading our blog, I know updates have been few and far between the last few months, I will try to change that soon.

September 22, 2009

2009-09-22T09:05:00.000-05:00

Things have been busy recently so I have not had a chance to update. All good things happening so no worries.

Yesterday Emma got her last 3 immunizations. She did well, only cried 2 little tears. Ella went with us and she held Emma's little fisted hand and told her not to be scared, it was so cute. Afterwards we went to the dollar tree, where Emma got a stuffed doggie for her bravery and Ella got candy for her kindness to her sister.

We went to church this last sunday, it was the first time in I don't know how long. No rain and it wasn't hot so we went. It was nice to get back, and I am hoping we continue to go. But with swine flu being a big scare I am really trying to keep Emma away from crowds, so we will see. Swine flu, what a topic. It really gets me worried. Most of the children who have died from it have under lying problems like lung issues or neurological problems. Sounds a bit like Emma doesn't it? So of course that makes me worry for her. I know that Ella and Derek's teachers are doing all they can to keep the kids well, they have hand gel to use and have been teaching how to cough or sneeze into the crook of your arm and not all over your hands or out in the air. I am still iffy on the shots, I worry they might not be safe. But we will all be getting our regular flu shot on Oct 15.

Derek has joined cubscouts. He is going to the Wichita Moutains for a hike this weekend. I wish we were going with him, but Darren has to work. They will be going to the top of Mt Scott (you can google that if you aren't from OK) which is something I did when I was around Derek's age. I spent quite a bit of time down in that area, since we grew up down there and its a beautiful place. I hope he has fun.

That's the update for now. I am going to work on the blog some, I have been wanting to make a page for some time, where you can click and just get a short summary of Emma's life and what her issues are and read about how awesome she is. That way new people to the blog don't have to read all the old posts to catch up.

Prayers for a friend

2009-09-11T08:35:00.000-05:00

To protect my friend's privacy I will not share who they are or give details (I don't even have details so please don't ask!), but I found something out this morning that I can not let go, it is weighting so heavily on my heart. I have to ask that everyone prays for this family. Their daughter is disabled, and this last week she was sexually assaulted. As you can imagine they are so very upset, scared, lost, and hurting for their daughter. Please pray that God will help them during painful time. They are wonderful friends to Emma and myself and to know they are hurting, well its just so heartbreaking.

September 11th

2009-09-10T21:18:00.000-05:00

Anyone that knows me in person, knows that this Momma has a very soft spot for Patriot Day. Long story short, I have always been proud of my country, but 9-11-01 was a very scary day for me, never in my life up until that point have I ever been so scared or prayed so hard for people I had never even met. So scared in fact it sent me into labor with Derek, who was stubborn and spent the next 36 hours taking his time!

Remember today is not about buildings burning or planes crashing. Its not about hate and war and getting even. Its about remembering those who lost their lives. 2,966 people died that day, to many of us that is just some number we hear and remember seeing the day unfold on tv. But to 2,966 families it is the day they lost an important person in their lives. Its not just a number. It is life. Life lost due to something that I personally will never be able to forget. I still cry to this day, thinking of how I wept and cried and begged God to save people, to save all of us, to save the world. It felt like Armageddon to me that day, and 36 hours later my son came into this world and like an angel sent straight from heaven, filled my world with goodness again. Let us pray that those 2,966 families can find goodness again. Let us never forget what we lost that day.

Help someone on 9/9/09

2009-09-09T13:23:00.000-05:00

Please help our friends raise money for Cystic Fibrosis! Nathan is looking for 99 people to donate $9 each since today is 9/9/09. If you can help please do, and tell your friends! http://cfhusband.blogspot.com/2009/09/9.html There is a link to his blog post it will tell you how you can help! You will have to copy and paste it, for some reason blogger will not allow me to post it as a clickable link (I still need to figure out why!?)

Sept 2 2009

2009-09-02T10:57:00.000-05:00

Derek and Ella are still home from school. Doing better today, so far. Praying that holds through for the rest of the day. Still coughing but no fever yet since last night so hopefully that means school tomorrow. They are mad that I have them laying down all day. I even rented them a movie and they still find ways to complain. If they don't go back to school tomorrow, I promise I will go in their place!!

Emma's not sick so far, and I ask that prayers be said that remains true. I can't imagine her having what they have. They have been miserable. Fever is so rough on emma too. But so far so good, we have tried to keep Derek and Ella off of her and out of her face and I have used a whole can of lysol spray and we wash our hands like crazy.

Above are the praying mantis pics I promised. We found her a while back, the kids named her Gummy bear. She is getting to big for the container I have for her, so hopefully today or tomorrow I can get her something a bit more comfortable to live in.

I have been having fun with my new camera and hopefully will be posting more photos for you all to see, I got some great ones of Ella the other day, just need some of Emma to post along with them.

Sept 1 2009

2009-09-01T19:53:00.000-05:00

Sorry its been so long since we updated. We have been busy! Our dear friend Celeste got married August 16 and Ella was the flower girl, Mommy was a bridesmaid. Celeste is the daughter of my best friend Shevaun who died of lung cancer March 1 2005. It was a beautiful wedding, although very hot, since the air didn't seem to work in the room they were married in at the state capitol.

Ella and Derek have started school. We are keeping Emma home to avoid germs, and its so nice to have alone time with her in the morning, for physical therapy and playing.I guess you could say she is homeschooled, although not in a typcial ABC and 123 kind of way, since she doesn't learn like that. Ella is in pre-k and only goes half day. Derek is in 2nd and goes all day of course.

Currently Ella and Derek are sick with nasty colds and fever. Ella has missed two days of school and Derek one so far. We are hoping they can go back tomorrow but they both sprung fevers again this afternoon so we will see.

We were donated a camera by a new friend so more pictures to come. Its a very nice camera, a Pentax x70 for those who know cameras. I am forever grateful to him for sending it. Right now my laptop is acting up and its our primary computer for picture storage, so it might be a bit until I get it up and running, maybe I can talk Darren into letting me put stuff on his.

Prayers go out to our friends the Lockwoods and the people in the areas around them. Hurricane Jimena is heading there way and will no doubt bring great flooding to their area.

I did attach 2 pics of Ella as Celeste's flower girl. They are pictures someone else took and I kind of "borrowed" them from their facebook page.

I will update again soon, have some pics of our new pet. Another praying mantis! Remember our two last year? This year we got ours as a very young mantis and it has motled for us a few times. Her name is Gummy Bear.

Shakey Baby Girl again

2009-07-25T21:05:00.000-05:00

Emma had a seizure today around 5. I had to give her diastat, which is the break through medicine they gave us, its given rectally, not fun to give it to her. It stopped it within 2 mins. She slept for about 2 hours and woke up doing just fine now, hanging out watching tv with her sister.

Here is how it went down so to speak: She had a small seizure it stopped by itself but then she dropped her oxygen sats to about 85, which is low but not super life threatening low. I bagged her (manual breathed for her) to bring them back up, for about 30 seconds and then she was fine. No oxygen, that would have been my next step if bagging did not work. I did a quick trach change, just in case it was plugged or something, it was a bit gunky but nothing pluggish. Then she had a seizure again, and I didn't wait to see if it stopped this time. I got her medicine and while I changed her diaper prior to giving it to her (She had a messy diaper) she dropped her sats to 89. Bagged about 5 squeezes of the bag and she came back up. Gave her the medicine and she went to sleep she was Not breathing over the vent at all, but that is ok, the medicine knocks her out and that is expected.

We have never had to use this medicine so I called Donna. Daniel's mommy. Daniel had to have it used a lot. She told me that Emma would be asleep for several hours and really limp and loose. Which she was.

So now we have to keep an eye on her and make sure she doesn't have any more seizures. I think if she has one more like this I will ask for something besides the zonegran. Right now she has had 2 seizures this year. That isn't really that bad in the grand scheme of things but if they continue I will worry.

2009-07-24T16:34:00.000-05:00

Sorry I haven't updated in so long. Wonder how many blog posts I have started out with that sentence? HA HA. There just hasn't been much to talk about. Nothing much going on around here lately. Emma is doing awesome, and is enjoying the summer time. I can't believe summer is almost over already.

I think I forgot to blog on going to see the neurologist about a month ago. I didn't see it in my posts, so hopefully this isn't a repeat. If it is, sorry. We got a refill on the medicine she takes to help control seizures, which is Zonegran. We also got some distat which is a rectal medication that will help stop a long seizure if she were to have one, like the one she had a few months back and ended up in the ER. They weighted Emma, she is 31 lbs, so she has only put on one pound in the last year, which isn't a bad thing really, they still don't want her putting on too much weight at once since that makes it harder for her to breath. They said she looked great and we go back in 6 months.

Here are some of the newest pics of our family. Yes, my hair is brown currently, but coming out so I will be going blonde again soon. These were taken on July 15, which was mine and Darren's 14th wedding anniversary. The family one isn't great but Derek did not want his picture made and its hard to get everyone to sit still long enough.

Not much more to share about right now, but I promise to start blogging more soon. Bless you friends!

2009-07-05T11:53:00.000-05:00

Today is a very special anniversary of sorts. One I would rather not have to commemorate but its also one I embrace in celebrating, if that makes any sense at all. Today marks the 4th anniversary of Emma coming home on her ventilator.

It is so hard to believe its been 4 years. Sometimes it feels like just yesterday, but then I sit and think of all the things that have happened since then and it feels like a little lifetime. In fact, thanks to that vent we have been able to have a little lifetime. Emma's lifetime!

That vent has given us something very special. Time with Emma. I hate to think where we would be without it. It has not worked alone, God has been there every single second, helping it right along. We have been given 4 Christmas times we might not have had, 4 birthdays, a few trips to the dinosaur museum, trips to the park, and the chance to take Emma to church and the opportunity to meet some of the most wonderful and dear people in our lives. Its given me 1,461 more nights to tuck her in and say her prayers. Its given me around 9,000 more diapers to change and 9,000 more meals to start on her feeding pump, which I despite sounding like a pain in the rear end I am glad to have been able to do.

What looks like a box with some tubes and blinking lights to most people, looks like a lifesaver to me. It may sound corny but its like looking at a piece of Heaven, an extension of God himself almost, breathing life into my little girl.

If I have learned anything from this experience, its that every day we have with her is a gift. I will never take one day for granted. I cherish every moment we have with her. It makes me apply that same principle to my other children too. You have no idea how precious life can be until its almost lost.

I think back to the dreadful times that Emma's breathing and heart stopped and how we had to do CPR. I remember crying and screaming and saying to God that I wasn't ready for him to take her. With this ventilator I know other than an illness, that kind of apnea will not take her from us. Its such a piece of mind, that little blinking box with tubes coming from it.

We have never lost faith, during all our darkest hours, and we never will. It is truly by his grace, not just the doctors and machines that Emma is here. So today I thank God for hearing my prayers, and answering my prayers. I know looking at Emma, you would think she was really sick and needed a miracle. But we have gotten our miracle, God has heard us. He has given us her life, it might not seem like a wonderful life from someone on the outside looking it, being hooked up to machines and not being able to walk or talk, but it is her life and that makes it the most precious thing ever.

I sought the Lord, and he answered me, and delivered me from all my fears. (Psalm 34:4) I am not longer afraid of nights like the CPR nights, he has taken away my fears, he has answered me, he has given Emma a chance for happiness, he has given her life, first at birth, then twice the nights she left us and needed CPR, and again July 5, 2005 when she came home to us on her ventilator.

The fireworks were postponed last night here, due to rain. But I think in a way maybe they were meant to be done today, the real day that my family, and that Emma gained her independence!

2009-06-28T19:53:00.000-05:00

We missed church today, it was just too hot to walk. Emma just can not tolerate the heat, it makes her shakey.

Cousin Killian came to visit and we babysat him for a while. Here are a few pictures that we took, figured everyone would want to see Emma with her new baby cousin, that she loves so much! Oh and had to include one of myself with him so you could see my new brown hair!

We have babies coming out our ears!

2009-06-26T16:00:00.000-05:00

Our life is suddenly full of babies!

Emma's Aunt Kayla had her twin girls this morning. Kiana was 6 lbs 9 oz and 19.5 inches long and her sister Myiah was 6 lbs 8 oz and 18.5 inches long. All is well with them, I forgot to ask which one was born first. I should know as a twin and a mom of twins that that is a very important question to have an answer to. Here is a picture of them. I am not sure which is which in the first one I will have to take the time to figure it out. In the second one Myiah is on the right Kiana is on the left, the last pic is opposite . They are so pretty and they look so much alike! We are so proud of Kayla and are extremely excited to welcome another set of twins to our family!

They aren't the only little ones we have been blessed with. Yesterday morning our good friend Donna had her daughter Delia Rose. 7 lbs 5 oz 19.5 inches long. All is well with them too. It was a long journey for Donna and Brian since their son passed away April 2008. We pray Delia will help fill their hearts with all kinds of happiness. I think she looks a little like her brother what do you think?

2009-06-21T14:07:00.000-05:00

I just wanted to post one more thing here on Emma's blog today. Its a prayer request. Please pray for the family of Robert Logan Anderson. We heard about him in church today. He died in an ATV accident, while at church camp, he did not go to our church but another one near here, and a lot of our youth and our pastor where there when it happened. We also ask that you pray for those that were at camp with him, as you can only imagine what it has done to their hearts. It sounds like a very emotional week was had at camp, and my heart is with his family right now. I can't even begin to imagine their pain as they laid their son to rest yesterday. I cried at church, and thanked God for one more day with my children. Hug your children a little tighter, and remember they are not ours, but God's we are ony taking care of them for a little while, we must take care that we make that short time as memorable and loving as possible.

Here is the Obit for the young man.

Shawnee resident Robert Logan Anderson died Tuesday, June 16, 2009, in Tishomingo at the age of 17. He was born July 8, 1991, in Oklahoma City to Monty L. Anderson and Danielle Y. (Alloway-Kenedy) Anderson.
He graduated from Shawnee High School in 2009 where he was active in band, Drama, and played golf.
He had enlisted in the Oklahoma Army National Guard and was to attend basic training on July 15.
He worked as lifeguard at the YMCA, the Municipal Pool, and Camp Bond. He was a member of the Church of the Nazarene where he was active with the youth group, was drummer for the Praise Band, and enjoyed helping at Camp Bond. He always had a smile, loved pulling pranks and wrestling on the floor, and no life he touched remained unchanged.
He was preceded in death by an aunt, Michele “Bobi” Anderson.
Surviviors include his parents, Monty Anderson and Danielle Anderson; two sisters, Rose and Sydney Anderson; grandparents, Phillip and Linda Kenedy of Burkburnett, Texas, Beverly and Gary Dockery of Hugo, and Sam and Donna Alloway of Tuttle; aunts and uncles, P.J. Kenedy, Mike and Melody Anderson, Ashley Alloway, Leslie Alloway; great-grandparents, Audrey Easley, Al and Pauline Maxwell, Gerald and Sybil Alloway and Blackie Norris; cousins, Michael and Melissa Anderson, Brandon Anderson, Cade and Alexis Vincent and other family and friends.
Service will be 2 p.m. Saturday, June 20, at Shawnee High School Auditorium with the Rev. Johnny Stevens officiating. Burial will be in Tecumseh Cemetery.
Memorial contributions can be made to Camp Bond, PO Box 855, Shawnee, OK 74802

Happy Father's Day

2009-06-21T13:40:00.000-05:00

Happy Father's day to all the dad's who are reading. Emma wants me to write something, and I am writing it in her point of view,she said "Mommy please won't you type this special thing for Daddy for me" it sounded more like "Squeak squeak gurgle gurgle" but I read between the lines HA HA.

Why I love my Daddy.
by Emma Richards *with help from Mommy*

I love my Daddy because he helped Mommy make me, I am half him. I have his big brown eyes, and girly long eyelashes, I am thankful I will never need mascara. When I was born Daddy came and sat with me in the NICU and held my head in his hand, I liked that, and he rubbed my eyebrows. When I got my trach he told me to be brave and he never left my side.

I love my Daddy because he helped breath life into me, when I stopped breathing when I was a tiny baby and my heart stopped. He did CPR, and gave me the air from his own lungs until help arrived. That makes him my hero.

I love my Daddy because he checks on me at night and kisses me and plays with me even though I am supposed to be asleep. He never complains when he has to change my diaper and he doesn't even mind too much if I drool all over his shirt when he holds me. Anyone that knows me knows, that I make a lot of drool so that really means a lot that he doesn't get mad.

I know my Daddy loves me very much, because he has never given up on me. He and my Mommy do what they think is best, to make my life easier and happier and keep me healthy. Daddy never thought twice when it came to getting me my trach or my ventilator, he just knew its what I needed. I know its hard for him to take care of me sometimes, I can be a real pain with all my bells and whistles but he does it all with a smile and kiss for me.

Most of all I love my Daddy because he takes good care of Derek, Ella, Mommy and me. He works hard so we can have what we need. He is strong and kind and funny and I happen to think he is the best Daddy in the whole wide world. I thank God every day in my prayers for giving me such an awesome Dad.

-----------------
What a sweet daughter I have saying all those nice things. I posted a picture of Darren with Emma when she was little, partly because its one of my favorites, but also becasue I have no recent ones, he tends to hide from the camera!

June 16, 2009

2009-06-16T15:33:00.001-05:00

New pictures of baby Killian. He came to visit us the other day and we had so much fun cuddling him and he is such a good baby. I put him in Emma's lap for a second in her chair, and Ella got to feed him a bottle. We are so happy he is here.

June 12, 2009

2009-06-12T10:33:00.000-05:00

I thought I had mentioned this before but I guess not. Our camera has died so no new pics for a while unless someone in my family (HINT HINT NANNY) comes and takes some of Emma. Yes, we are apparently very hard on camera's. Dad dropped ours in a glass of Dr Pepper (don't ask) several months ago and it was working for a while, off and on but now no such luck. I am considering a waterproof one next time!

All is well here. Emma is doing great, sleeping good, playing good and happy as ever. I think if all goes as planned we are going to venture out to Church this weekend, and hope that we stayed away from crowds long enough to avoid swine flu. Its slowing down here in Oklahoma, despite being a world wide pandemic now.

Tonight Emma will be watching Hockey and cheering for her Red Wings. Tonight we are hoping they win the Stanley Cup and we will be smiling and cheering for Daniel, since they were his favorite team too. His Mom says that they won the cup the year he was born and also the year he died. I think that is kind of neat. Sad but neat. Oh on the subject of Donna, she is doing great, sore from being so pregnant but doing good. She will be having a c-section on June 25. I am pretty certain they are going with the name Delia Rose. I bet she is so beautiful just like her Mommy and I can't wait to see pictures and eventually save up and fly to see her and give her tons of sweet baby kisses.

Speaking of babies, cousin Killian should be coming for a visit this weekend some time. We got his mom a present so she better come! I haven't got to hold him yet, and the kids are dying to see him too. I hope his mom will take some pictures, even with just her cell so I can post them here. I can't wait to lay him in Emma's lap on her chair and let her gaze at him.

Well that's it for my update, I just wanted to get back on here and let you know things are doing great.

Baby cousin is here (edit with pic)

2009-06-08T17:16:00.000-05:00

Emma has a new baby cousin! Aunt Amanda had Killian Joseph today at 2:58pm, he is 7 lbs 10 oz and 20 inches long. Lots of dark hair with red highlights. Both he and Mommy are doing fine. We are so excited and can't wait to see him. Hopefully we can see him this weekend, since I have a cold and don't want to give it to my new baby nephew! Will post a picture when we finally get one.

Congratuations to my sister in law and her boyfriend.

No news is always good news

2009-06-04T22:00:00.000-05:00

Sorry we haven't been updating as often lately. There isn't much to update. Emma is just hanging out enjoying life, and we are all enjoying her. Its true what they say, each day with her is a gift.

Monday Emma's new baby cousin will be here, if he doesn't decide to come over the weekend. Aunt Amanda (Daddy's sis) will be having an induction at 5am. We can't wait to see Killian Joseph and spoil him rotten. Pray she labors fast. She wants to have it over with on the 8th and not carry over into the 9th. June 9th would have been the 5th birthday of my nephew Gabriel that passed away shortly before his birth. She is so nervous she will have to have him share that day, the day his brother died. I hope everything goes quickly and as pain free as possible for her. Makes me glad I had a c-section with the girls, thinking about her labor. After 36 hard hours with Derek, I am glad I didn't have do all that again.

Emma goes to see the brain dr on June 18th for a check up and get her prescription refilled. Actually our doctor quit so we will be seeing a nurse but that is ok with us. We are also awaiting paperwork to get a new evaluation to start physical therapy up again, she hasn't been in a while since her therapist quit. Happy to hear her therapist went back to work there and I hope we will be lucky enough to get her for therapist again when all is said and done. She also put a request in for occupational and speech therapy for us.

Today we planted sweet pepper plants and basil. I want to grow more, but our back yard is small and I don't want to take too much play space away from the kids. I am considering some potted herbs or something. I just love digging in the dirt and look for any excuse to do so.

Hope everyone has a blessed weekend coming up.

Happy Memorial Day

2009-05-25T10:10:00.000-05:00

Sorry there has been no blog update for a while. Not much going on. We have been sticking close to home, since swine flu is going around we don't want Emma to get sick. But we are starting to venture out to some not so crowded places.

Last week we went as a late mother's day gift, to one of my favorite eating places. We went a little early and avoided the crowd. There were only 2 other tables full when we got there. The waitress remembered Ella and Emma from our last trip a few months back, I am surprised since that was the only other time we have taken the girls. She even remembered their names! It was yummy food and we had a pretty ok time.

Emma is excited to watch nascar today, it got rained delayed last night which made her a little bummed out. But she did manage to watch the Indy 500 and some Red Wings Hockey so the day wasn't a total loss. HA HA. She is still sleeping, and has to get up and in her chair so she can watch it with me. I think she is cheering for Tony Stewart today, but don't tell anyone in our extended family, they are all Jeff Gordon lovers.

I remember our big cook out last year on Memorial day, it was so fun. But its hot and I am not in the mood to get outside today, and worry if Emma over heats she could have a seizure. So its a day of nascar and eating lasagna tonight Yummy.

So on the topic of Memorial day I found this poem I thought I might share. Please remember those who gave their lives for your freedom today, and those still serving to protect you today. God Bless Emma's Uncle Jay, Uncle Adam, and friends who serve (too many to list but you know who you are) Also thinking of the families left behind and hoping today they will know that we do not forget.

--------------

The poppies blow

In Flanders fields the poppies blow
Between the crosses, row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.

~Written by John McCrae~

May 14, 2009

2009-05-14T12:48:00.000-05:00

Our friend Emma Mae will be laid to rest Friday morning, please keep her family in your prayers. My Emma is really missing her best friend and all our hearts are broken.

Here is a video the funeral home did for Emma Mae.

May 13 2009

2009-05-13T08:31:00.000-05:00

What a day yesterday was. First we read little Kayleigh passed. Then I got a phone call and it is with heavy heart I say that Emma's little friend Emma Mae also passed away yesterday. You might remember Emma Mae from the christmas pics I posted, we had ornaments with her and her brother's picture on them hanging from our tree.

Emma Mae aka little Emma was my Emma Louise's aka Big Emma's best friend. Though they never met, we all became close over the last 3 years online.

Emma Mae had spina bifida. She turned 3 years old in March. Two days ago while riding in the car she stopped breathing and despite CPR she suffered severe brain and organ damage and yesterday morning she went to be with Jesus.

So as you can imagine we are really sad here and I am writing this to plead to everyone to please pray for her family. Her Mom Cristina, her Dad Matt and her little baby brother Caleb. I can't even begin to comprehend their profound loss. My heart aches for them.

Last night, we moved a picture of Emma Mae from Emma's bulletin board and put it with her picture of Daniel that sits in her bed. Now both her angels are watching over her.

May 12, 2009

2009-05-12T08:19:00.000-05:00

It is with a heavy heart I ask you to click on our friend Kayleigh's blog today and ask for prayers for her family. Little Kayleigh lost her battle for life last night and now is in the arms of Jesus. A lot of courage and strength was packed into that little 1 lb miracle from God, her courage and spirit has been such an inspiration to us for such a long time. Bless you little one, and prayers will always continue for your family.

Happy Mother's day

2009-05-10T17:18:00.001-05:00

Just wanted to do a quick update and say Happy Mother's day to all those Mom's out there that stop by to read our blog.

No big plans for us, Dad had to work today, so we might go out to dinner next week when he is off. Just been hanging out with the kids, and enjoying the day.Made some hamburgers for dinner yummy yummy. I did get a beautiful flower arrangement from Donna, Daniel's Mom. She is a wonderful best friend.

We did not make it to church, and I and we probably will not go for about 2 more week or so. Swine flu has found its way to our state and town and we are avoiding large crowds with Emma. We will miss our church family so much, but we really want to be careful to keep everyone well. I am not super parnoid about swine flu, we took these same precautions during regular flu season as well. In a few weeks time we should be able to tell how bad it is, and hopefully it will be minor so we can get out and go back to church and shopping trips.

Bless you all, thanks for checking on us, and again Mom's have a great day!

PS the above pic is a Cerebral Palsy awareness button, I love it!

Videos about Daniel

2009-04-28T10:48:00.000-05:00

Daniel's daddy made these for him and they were so beautiful I couldn't help myself, I had to share! I have done well today until I saw this and then I cried my eyes out, but the funny thing was I was smiling and laughing at the same time! I was just so happy such a precious angel boy lived and I feel so blessed to see the videos of him!

.

Daniel's "angelversary"

2009-04-28T08:52:00.000-05:00

One year ago today, the world lost one of the most precious little angel boys that ever lived. Daniel aka Homer.

I have been thinking all week, that I need to blog on here today about him. About how special he was to Emma and to our family. But today I find myself sitting here, no words able to come to me that would even begin to explain how much we loved him, or how much we miss him.

Yet underneath our sadness today is another emotion I didn't expect to feel. Pride. Pride in his parents. I am so proud of their strength over this last year, they have amazed me beyond words. I can't begin to imagine how hard it has been for them, yet through it all they have managed to be there for me, and for others. They went to see Emma for surgery and Val when he had surgery and just got back from visiting little Jay when he needed the support. How awesome are they!?

I want to wrap my arms around them and cry and tell them how sorry I am that they feel such pain and that their little boy is gone. Then another part of me wants to pat them on the back and congratulate them for making it though this first year without him. Times have been so very tough for them, yet they have survived. For that I do congratulate them.

Today should be a day of happiness and joy, to celebrate the life of an amazing little boy. We are planting a garden today for him, and I will post some pictures later. So please remember him today, say a prayer for his parents and hug your loved ones a little bit tighter.

I will never let go of the most important thing he ever taught me, and that is how to love and how to accept others for who they are. He and Emma have both taught me life is precious and a gift. Thank you so much Daniel, I miss you and love you forever and always.

Restful night for Emma

2009-04-26T10:31:00.000-05:00

Emma did great last night, no more seizures. She slept really hard only waking up a bit when we changed her diaper and once when I went in and gave her a noisy kiss and she hated it and yelled at me! She is still asleep as I write this at 10:30 am. I might let her sleep as much as she wants today. I am sure she is just really worn out from all that shaking.

Ella is still at my mom's she went over there Friday and I thought she might come home today but yesterday she cried when I told her that, so I am sure she is going to play her "one more night" game later. She loves it at her Nanny and Poppy's house.

Mommy stayed up way too late, I sure did. Watching tornados and storms online. A big tornado touched down in the small town of Kremlin OK and also one in Enid. We have friends in Enid I have not heard from yet, but I am sure its because their power is out. We have a chance of storms today and a bunch of days this next week.

That is the update for now, keep praying that the extra medicine will keep Emma from shaking again.

ER trip

2009-04-25T15:53:00.000-05:00

Everyone please say a little prayer for Emma. She is home now, which is good but we spent several hours in the ER after going by ambulance. She had a seizure, which of course she is on medication for, but never has she had a seizure that lasted that long and made her shake so hard. They took her by ambulance and gave her some valium which made her stop shaking.

All her blood work came back ok, so they are just saying its due to her brain. They did up her zonegran medicine she is on. Thankfully they have not put her back on the Phenobarbital as of yet. I hope she doesn't have to be on it. She was awake for about only 4 hours a day when she was on that stuff. Its a quality of life issue for us, how can she enjoy life is she is asleep that much? Of course we don't want her brain hurt further by a seizure so if they decide to put her back on it, then we will do so and just deal with her being sleepy.

So things are ok for now. No reason to think they won't stay ok too since they upped her medicine.

Prayers needed for another little friend--desperate!

2009-04-22T07:31:00.001-05:00

First of all thank you to our friend Laura who pointed out the fact I needed to check a blog this morning, which I had not done yesterday.

A while back I asked for prayers for Kayleigh, the beautiful little preemie who was having a rough start to life. I posted a link to her page and I hope everyone went to see it.

Well, something terrible is going on with her and she is in desperate need of prayers for a miracle.

I am borrowing this paragraph from her blog, but this is also so much more to the store so I will post the link again. Please Please Please pray for her!

**From Kayleigh's Story***

Her sweet tiny body lays still, with very slight (unexplainable) movements at times, while her muscles are contracted beyond any measurable understanding. The thought of some kind of neurological problem quickly raised a red flag and an EEG test was conducted only to show that a big section of Kayleigh's brain (cerebral cortex) is not working at all and may never work again. In other words, the doctors stated she has a flat reading, which is another term for being brain dead.

Click the picture to go to her blog

Our little friend needs prayers

2009-04-21T08:07:00.000-05:00

We have an online friend that really needs your prayers right now. His name is Stellan, and he is undergoing heart surgery as I type this. Will everyone please remember him and say a prayer? Its beening asked everyone wear Orange today and pray for him. I have searched the closets high and low and found no orange can you believe it? But the prayers are the important part. Here is a beautiful picture and link to his update site if you want to read more about him and hear updates from today's procedure. Just click the picture to learn more

To all parents of special needs kids

2009-04-12T20:50:00.000-05:00

I found this while searching online today and thought I would share it. Its is so beautiful, I wish I had written it, it says exactly what I have prayed for and how I feel. Its beautiful and comforting and I hope it touches some of you like it has me.I especially like the second little paragraph, about her spirit being whole.

And God Said No
Copyright © Claudia Minden Weisz (the mother of a Rett Syndrome child)

I asked God to take away my pride. And God said "No".
He said it was not for Him to take away, but for me to give up.

I asked God to make my handicapped child whole. And God said "No".
He said her spirit was whole, her body was only temporary.

I asked God to grant me patience. And God said "No".
He said patience is a by-product of tribulations. It isn't granted, it is earned.

I asked God to give me happiness. And God said "No".
He said He gives me blessings, happiness is up to me.

I asked God to spare me pain. And God said "No".
He said suffering draws me apart from worldly cares and brings me closer to Him.

I asked God to make my spirit grow. And God said "No".
He said I must grow on my own. But He will prune me to make me fruitful.

I asked for all things that I might enjoy life. And God said "No".
He said He will give me life, that I may enjoy all things.

I ask God to help me love others, as much as he loves me.
And God said "Ah, finally you have the idea!"

Happy Easter!

2009-04-12T14:41:00.001-05:00

I am sure many of you are wondering if we made it to church in the rain today. Of course we did! I would not have missed it for anything.

We did end up walking in the rain, but had a dry walk home thankfully. We wore raincoats and used an umbrella, and covered Emma's vent and battery in plastic. Emma's hair got really wet, but it made it crazy curly which was adorable. I do think I ruined my good dress shoes, and did have to sit through church with soaking wet feet but it was worth it. I figure if Jesus loved me enough to die for me and rise again then the very least I could do is get my kids to church on Easter even if it was raining.

The band dedicated a song to Emma, which made me cry. They said how she was a good girl who sat in the front row and we turned around and I helped Emma wave. It was beautiful and she enjoyed it.

So many people were baptized today, and it sure made me think of the day I was baptized, and my heart was just beaming thinking of it. I was so happy for those who were "getting dunked" today because I know how wonderful they are feeling, and it is such an awesome thing.

We also did Lord's Supper (Communion for those who choose to call it that) Emma was able to take it with my help, and its the very first time she has ever done it. Again, I teared up. I was so proud of her. As they talked about what it signified she really listened, and I said a prayer in my head and whispered to her what it meant so I was certain she understood. What a wonderful thing, I got to do with my daughter. She is learning in her heart what it means to follow God and be a good Christian. I know she can't tell me things, but I think in her heart and mind she is talking to God a lot, and that she is doing right by him. Its a great feeling to know that, that my daughter has a special relationship with God, only one he and her understand.

Derek and Ella had fun in Sunday school. They got some candy and learned all about what Easter means. I am surprised at how much Derek talks about things and understands them, that makes me proud too.

When we got back the "Easter bunny" had hidden eggs inside our house. The kids got a basketball, and some books. Emma's book is all about Jesus and children, she likes it. Yes, we do eggs at our house, but we also make sure our kids know the true meaning of Easter.

Taking the kids to Easter services for the first time, will be something I never forget. My heart is just full of happiness today! I hope everyone else is having a blessed day.

April 10, 2009

2009-04-10T21:12:00.000-05:00

Emma is still a little sick, but I think we are on the down hill end of it now. I am hoping she will be almost all better by Sunday. It is still supposed to rain but I did hear today on the news that there may be a break in the rain for a few hours around 10am. 2nd services at church starts at 11, so I am hoping we can get a dry patch of weather and walk to church. Really praying hard that happens, I want to see how Easter is celebrated at our church, since we didn't go there this time last year.

Emma spent the last 2 days resting and getting extra humidity from her humidifier that is connected to her vent. That has helped keep her mucus in her lungs thinned out some, this cold has really played havoc with her nose more than anything else, and she has me suctioning her nose every time I turn around! No fever today so that is good. She was wide awake when I tucked Ella in a bit ago, but I think they have both fallen asleep now, I took a quick peek and they are either sleeping or faking it really well. Well just as I type this Emma is making gurgles so time to go suction again!

April 8 2009

2009-04-08T21:47:00.000-05:00

Well Derek started it on Monday by getting cold symptoms. He is better, but yesterday Ella was sick and last night Emma got sick. Ella is doing better today, but Emma is still pretty icky. Fever, runny nose, and more suctioning in her trach. Nothing terrible, no oxygen needed, no funny colored mucus or anything that needs a drs attention. Just a spring cold.

I just pray she is well by Sunday and that we can find a break in the predicted rain to walk to church on Easter. I don't know who is looking forward to Easter Services more, me or the kids!

Its been a busy week, Ella started doing preschool here at home, taught by yours truly. She is doing well and having fun. Emma sat with us yesterday before she started feeling sick and helped us do the abc song and days of the week song we do. Ella liked having her sissy there.

Not much else to update, as I am tired from staying up half the night last night with Emma. I worry more than I should, so I didn't sleep well I kept getting up to check on her, even though Dad was up and doing the same. Please say a pray this is short lived, and if you can help do a reverse rain dance LOL we would like to go to church Sunday!

Happy Palm Sunday.

2009-04-05T17:41:00.000-05:00

Ella's picture

Ella's palm

Emma's picture

Emma's palm

Hanging on the fridge

Just a quick note to start off this wonderful week of blessings as Easter nears. We went to church today and the girls drew palms, and little pictures of Jesus as he got to Jerusalem. Ella did hers in class and I helped Emma with hers since Emma goes to big church with me. I had to put the crayon in Emmas hand and move it for her. She does great holding the crayon though! Ella made me take pics of them hanging on the fridge, so I will post them here for you.

We have missed a few sundays due to moving and the weather, but it was nice to get back. Everyone was glad to see us, and we were glad to see them. Emma got lots of welcome back squeezes and lots of hellos. I love the people at church they always make a point of including Emma as much as possible, and that just warms my heart.

We suggest everyone read Matthew 21: 1-22 in their bibles, it talks about the importance of today.

March 30, 2009

2009-03-30T12:32:00.000-05:00

I took pictures yesterday, so I thought I better share them. One is the birthday cake that the kids helped make Daddy. Emma held the box so we could see the directions, Ella helped crack the eggs, Derek picked the spiderman for the top. Of course everyone licked the spoons and icing knife.

Emma wore her new dress, a thrift store find, that just screamed her name when I saw it, thanks to the butterflies on it. Best $3 I ever spent.

Have a blessed week, our dear friends.

The LORD bless thee, and keep thee: The LORD make his face shine upon thee, and be gracious unto thee.
Numbers 6:24-25

March 28, 2009

2009-03-28T21:51:00.001-05:00

Like the new layout? Just felt like I needed to make a change. You know how I am about leaving something for too long

We found out some amazing news yesterday! Emma's Aunt Kayla is having twin girls in July! Kayla is Daddy's step sister and she is a such a wonderful person, we are so excited for her. She has picked the names Myiah Luz-Elva who is named after her daddy's mom who passed away in Jan and Kiana Marie who has her Mommy's middle name. I am so thrilled for her, more twins. And the neatest thing is now Grandma Sherry can say she has two sets of twin grand daughters. How neat.

Today was a busy day. The kids helped bake a cake for Daddy's birthday tomorrow. We will decorate it tomorrow but I wanted to get the baking out of the way now. Its strawberry and made the house smell so good.

We got a very very light dusting of snow last night, much to everyone's disappointment. We wanted to make a snow man. This is the first year in Derek's life he hasn't been able to make one. How sad. But oh well that means flowers are blooming and shorts can be taken out of the closet sooner.

I am planning a memorial garden out front for Emma's little friend Daniel that passed away last year. The anniversary of his death is coming up April 28 and I thought it might be a very special way to remember him if Emma and I planted some flowers that day and put a little pretty something out there that reminds us of him. I will make sure to take pictures of the finished project.

That is it for the update. Not much to say tonight.

March 19, 2009

2009-03-19T09:55:00.000-05:00

Our beautiful friend JayeBear has pointed out it has been a while since an update. So I thought I better put one up. I know she can't be the only one wondering what is going on in the life of Emma and our family.

It has been a few days. Last week Mommy ended up in the ER. Yes, I was terribly sick with the stomach flu which I got from Ella, who got it from Derek, who got it from his new school. Had to call Nanny and Poppy to take me when I threw up non stop for 3 hours. Actually non stop! Got an iv and some Zofran and felt icky for a few days but am much better now.

Ella is at Mimi's spending the night so yesterday Derek, Mommy and Emma took advantage of the 80 plus degree weather and went to fly a kite, and play basketball and soccer. We tried to tie the kite to Emma's wheelchair and run really fast, but it didn't work. We got a bum kite I think, it kept pulling to the right and crashing.

Then last night, Derek threw up! Wondering if the cycle of all being sick is starting again, I sure hope not. He seems fine this morning and even wants to go shopping so I am wondering if he just ate something that didn't do his stomach good or if the heat just got to him yesterday. We have found he is pretty good at soccer and basketball. We played HORSE on the basketball court, and he got all the way to R before I got lucky and won.

Prayers please for our friend Emma Mae, I won't get into too much detail but her family is going through a rough patch right now. We call her little Emma, she is younger than our Big Emma. She has Spina Bifida. She is beautiful and funny and has the cutest little cheeks you ever did see. Anyway her family could use some prayers that a situation they have found themselves in works out.

That's our update, we hope everyone reading is well and has a wonderful day!

Happy Birthday to our dog Violet

2009-03-13T12:35:00.001-05:00

Yes we are super silly. We made a birthday cake for our dog yesterday. She turned 3. Emma did not join in the singing, but decided to nap through it in her chair. The cake was liver dog food topped with straberry fluffy yogurt, then we used her kibbles and bits dog food to decorate. It wasn't as pretty as last years cake I actually BAKED for her, but it worked and Violet loved it. I threw it together last min. Her birthday snuck up on us.

We were going to make brownies for the kids to but found that some how I have lost my two brownie pans in the move.

Update on our friends the Lockwoods that I asked you to pray for. Mrs Lockwood had her baby boy early this morning, he was about 32 and half weeks along, don't know many details as of yet, he is small and doing ok, he cried at birth! She was in recovery during their lost post on the blog, a friend was posting, and apparently she is doing ok too, will post more when I have details.

March 12, 2009

2009-03-12T08:27:00.000-05:00

We woke up to freezing rain, and a super cold morning. Emma decided she wanted to go back to sleep. Its ok, its only 8:30 its not like she is sleeping the whole day away. I really wish spring would get here to stay.

I just wanted to post a few new pics of Emmie. She got new shoes the other day that I am for some reason totally in love with. They are a cheap version of crocs and are pink hippos! Her feet remind me of the hungry hungry hippos board game. I sure hope they don't try to eat her toes! They are perect to put on her in her wheelchair, they are kind of wide so they help keep her feet in place on the foot rests.

Also had to post the last pic and give a shout out to my brother Jay. He is in the Army National Guard, and sent that hat at Christmas time. Derek normally wears it but I popped it on Emma for a pic. He works at MEPS or Military Entrance Processing Station in the Seattle Area, helping get people all processed to join the military. I am so proud of him! He used to be Active Army but is not full time Guard and has been in close to 20 years now. He serves our country proud and makes me one proud sis! Emma is one proud niece too, hence the hat pic. :-)

Not much else going on around here, have to throw together a little birthday party for our dog later, she is 3 today and the kids insisit we do something! :-) Maybe if you are lucky I will take some pics so you all can have a good laugh.

2009-03-11T08:24:00.000-05:00

Here are some recent videos of Emma and Ella I have taken. They are so cute together.

One is a video of Emma taking a bath, no nudity thanks to our trusty Winnie the Pooh blanket. I thought of not posting it for privacy issues, I don't want her mad at me HA HA but I know lots of people have asked how she does every day normal things like take a bath so I thought this would be useful at helping explain it. Another is of Ella helping her in the tub. I also have one of the girls just playing. I also included one of Ella helping me do laundry just because I think she is cute.\

I had to upload them from facebook, as blogger is being sooooo slow posting their videos this morning and I have no patience what so ever for that. :-) You dont have to have a facebook account to view them.

This is how Emma takes a bath

This is Ella helping Emma in the bath

This is Ella singing to Emma but Emma only wants to watch tv
I love how Ella strokes Emma's cheek!

Ella being a "little mommma" and helping fold clothes.

March 8, 2009

2009-03-08T20:35:00.000-05:00

Not much to update on, but figure some of our readers would appreciate a short update. We are just hanging out enjoying our new home, and unpacking. Yes, still unpacking, I don't think I will ever be done.

Emma is doing great, I think her favorite past time lately has been watching tv. It keeps her content while I unpack boxes, but I think I have created a monster! She sure was yelling at the nascar race today, every time they mentioned Carl Edwards, who I think is her favorite driver. She probably gets the yelling at nascar from me, I was cheering pretty loud toward the end for Jeff Gordon to win, (Yes I cheered for him today!) but he got second place. As soon as allergy season passes, I look forward to getting her outside some during the day.

Last week while Derek was in school, Mommy and Daddy took both girls out to lunch and shopping at the dollar tree store. It was fun. Emma talked to the waitress and a few people made a fuss over how cute she was. They fussed over Ella too, but she turned on her "shy switch" and wouldn't talk to anyone. We went to the hardware store and saw a huge dog that belonged to one of the workers. It was a German Shepard, the biggest I have ever seen, his feet were huge. He was so very gentle and calm. He let Ella and me pet on him and he sniffed at Emma's feet but didn't try to bother her much. Emma liked the doggie I think. I know Ella did, she talked about "Kota" for hours.

I finally got around to hanging up Emma's cross collection in her room, so I have attached some pictures to this post. They are all special. I actually think my favorite one is the little one made of sticks and white string. It is from sticks I got at the Oklahoma City National Memorial, from the Survivor tree. Don't worry, I didn't break the tree, they were twigs from under it on the ground! The tree survived the Oklahoma City bombing, while everything around it was blown to pieces. I think its a good one for Emma, because she is a survivor too!

I got the book "The Love Dare" from the movie "Fireproof" I am on day 2. Its a very good book, beautiful words and wonderful advice. I would suggest it to anyone who is married, even if your marriage is in good shape, its an emotional read, and I really feel it could help all of us be better at being a wife/husband and better Christians.

Oh, I also wanted to update on our friend Peter, who I asked you to pray for a few posts back. His surgery went well, some bleeding, but he is recovering well and is home and getting stronger every day. Thank you all for the prayers.

Well that's the update, please continue to pray for our blog friends the Lockwoods. Their little boy is still, by the Grace of God, safely inside his Momma's tummy. She will remain in the hospital on bed rest until his birth, which probably won't be long from now, so she really needs your prayers too!

Tolerance, Acceptance, and Love

2009-03-02T19:34:00.000-06:00

As you may have noticed a while back I changed the theme of Emma's page. I put a header
at the top that says "Emma's Story, one girls journey to teach the world: tolerance, acceptance,
and love. I even had business cards made up for her with that on it and her blog and email info
I like to pass them out to people we meet so they can learn more about my sweetie girl.

If anyone wants some cards to share with your friends, I have tons, just drop me an email with
your mailing address to the email address on the left of my page and I can send you a few!

So you might wonder what I mean about teaching the world tolerance, acceptance and love.
When Emma was first born, I wondered why she had to be so different. I never cried about it
or worried, I just wondered why. Then I realized God put her on this earth for a reason. To
be loved and to love. To teach others that being different is OK.

I think if Emma could talk, she would want to teach these things. Maybe I am just hoping
she would, maybe they are more my hopes, but we have talked about it, and I do think she
agrees, as much as a little 4 year old could possibly understand about it all.

She wants to teach tolerance. Tolerance to those who are diffrent than you are. Be it the
color of their skin, their ability to walk or talk, the country they are from. She wants
people to learn that you have to be tolerant of those who are a bit slower than you, or that
talk differently. To understand you need some patience when you are in a hurry at the store
but manage to get behind a wheelchair bound person that is going slow in the aisle you need
to be down.

She wants to teach acceptance. For people to accept her for who she is, faults and all.
Because its those "faults" that make her perfect. Accept that she is just another girl
looking to be loved, and that even if she is in a chair with tubes poking out her she is still
the same as you. Accept that.

Love. Well of course she wants to teach Love. Love is what makes the world a happy place to
be. Weather it be the love of a friend, a mother, a grandma, or just someone who reads her blog.
She just wants to be loved. She wants to love too. The greatest Love ever felt, is the love
between someone and God. Emma knows that love, and she will teach it to everyone, maybe not
in words or with her actions. But I truly believe anyone that knows Emma will feel a little
part of God, because he sent her here to do good on this earth. She is evidence there is a God
and that miracles happen every day. She is a blessing, not only to me as her Mother but
anyone she touches in her lifetime.

So anyway, sorry to get all long winded and sentimental, but I really thought I would
explain what all that header meant. Hope everyone gets something beautiful out of it, but
if you take anything at all from this post, just take that everyone deserves love and
acceptance for who they are, and deep inside we are all t

A friend needs your prayers, another your help!

2009-03-02T19:08:00.001-06:00

We are in desperate need of some prayers for our blog friends the Lockwood's. http://lockwoodfamily.blogspot.com/ You will have to copy and paste the address, for some reason blogger is not allowing me to post clickable links today. Mrs Lockwood is having a very difficult pregnancy and ended up in the hospital yesterday. She is 31 weeks along, and they are hoping to help her last a bit longer. The girls being born at 31 weeks just gets me thinking about how tiny their baby might be at this point. Plus, her health is in danger too, and she is a very kind and very spiritual woman who I have grown to really care for online. I ask everyone to pray for her safety, her babyi boy's safety and for her husband and children at home. Her faith is so strong, she is such an inspiration, even in rough times she is clinging to God with all her might, and I know he will see her through this.

Also if its not to much to ask can anyone is able to please go check out and donate to our friend, who is trying to raise money for a wheelchair. Again you will have to copy and past the link, sorry!

http://www.fundable.com/groupactions/groupaction.2009-02-19.9820156255

Ella's home

2009-02-28T19:09:00.001-06:00

Ella is back from Nanny's and having lots of fun playing in her and Emma's room. Her favorite thing to do is make and unmake her bed and she just does that over and over again! She loved all on Emma when she got home and was glad to see her sis. Emma is up on the couch right now watching cartoons and I took the chance to snap a few new pictures of her.

Ella also wanted me to post her new fish's picture. Ella got a yellow fish and Derek got a new blue/black fish. Derek's name is Johnny and Ella named hers Johnny Cash. Now anyone that knows Ella knows that she is in love with Johnny Cash music for some reason, and that fish name is perfect. I also put a pic or two of Violet the dog up, because she is being a good dog today and helping me keep watch over Emma and listen for her beeps. Violet likes to sit on the floor next to the couch to "keep watch" when Emma is sitting there, its cute. She really never pays Emma much mind, just wants to be close to her. Who could blame her? Emma is so cute!

Emma and Ella's new room

2009-02-27T14:44:00.000-06:00

In our new place

2009-02-26T18:15:00.000-06:00

Well its offical, we are in our new place. I still have tons of things to unpack, but I really really really love this place! I will try to post some pics in a day or two when thing are finished. Every thing feels so odd and new. Derek has his own room, which is going to be superhero themed. Ella and Emma have a disney princess room, I still need to get them 3 posters, but it already looks like Walt Disney threw up in there room! HA HA. Everything is pink and girly.

With a new couch, washer, dryer, computer desk and fridge, it wasn't a cheap move that is for sure, but I am so glad we did it! I love the extra space. I love the little yard, which still needs to be mowed but its perfect anyway. I have a hall closet for Emma's supplies, its the only thing "done" completely in the house so far. Everything fits perfectly.

We are going to have to order a kitchen table, as everything in town is either too expesnive or just simply junk. We need something to hold up to the kids.

Derek seems to like his school, and really likes the very short walk it takes to get there. No more than 5 mins! They have a day off tomorrow for parent teacher confernce, and I think he is glad to have it off, its been a long week. Sleeping in sure sounds fun.

My allergies are still killing me. Emma and I walked with my sister to the Dollar Tree store today and it has made my eyes all itchy. I found quite a bit of disney princess items in there. I was happy about that.

That's the quick update, I will post pics as soon as I get a few more things put away.

Prayer Request and moving soon

2009-02-22T13:34:00.000-06:00

Hey everyone just wanted to make a quick post, since we will be busy moving the next few days. I am packing and we plan to move the truck over late tomorrow or early Tue. Derek starts his new school tomorrow, he is excited.

I wanted to also write and ask that everyone please put my friend Peter in your prayers. He is having surgery on Wednesday. There is a link on the left side of our blog that will take you to his blog, go check it out. He is a very nice young man, and is having some serious surgery that could help him a lot, but there is a chance the doctors will have to do more extensive and dangerous surgery. So please pray all goes smoothly.

Ella is over at Nanny's for the week while move and unpack, she was so excited to take Nanny and Poppy to the new house and show them her and Emma's room. She ran all over the place bragging about how she was going to be with Emma. It was cute.

So I will try to update, probably won't do it again until we are in the new house, unless I found time between now and then to do it. Keep your fingers crosses that the move goes smoothly for us

We have a new place to live!

2009-02-19T20:28:00.000-06:00

We signed the lease today, plan is to move this coming Monday and Tuesday. The electric company is set up to switch but I have to talk to water and cable and phone tomorrow. We went by to go look inside and take pictures and it wasn't until we got there we realized that we were given the wrong keys! So they are meeting me in the morning to switch them out, and I am going to try to take some pics before we move in. I snapped a few outside today, except the backyard, which needs to be mowed, so I will have do that this weekend I guess.

The backyard is really small. Its ok though, we have no yard here at all so even a small one is a step up for us,and it won't take long to mow! They do the yard up keep in the front yard which is nice. I looked in the windows since I have yet to see the inside, and all I can say is its going to take some getting used to! Things looke so oddly shapped, small, or just diffrent and its going to take some planning and unpacking and moving things around to get things the way I want I think.

I dread packing, but thankfully my Mom is watching Ella for us which will help. Derek can help us and Emma, well Emma can hang out and keep me sane the next few days, and offer me lots of kisses when I need them!

Anyway thought I would post the update, I will try to put some pics up some time tomorrow, if I can finally get the right keys and get in!

Moving

2009-02-18T17:43:00.000-06:00

Well we did it! We found a place to move to, we sign a lease tomorrow. Its the one I was talking about in the previous post. 3 bedrooms, small yard, and close to school and church. We are so excited but do dread the moving process a lot! Busy Busy time for us the next week or so. We are hoping to move next Monday and Tuesday so I will be busy packing all weekend. Not sure we will get to move in that early but that is the plan if the lease allows it. They did say it was move in ready so we will see. If we get the keys tomorrow I am going to go over and measure things and take some pics.

The girls will share a room, Derek gets his own and Daddy and I get our room. Oh and Violet getst the yard! We still need lots of things, like a kitchen table and chairs since we don't have one, a new couch, that kind of thing. Our current couch has about had it.

Thanks for all the prayers, I think we were heard!!!

Feb 17 2009

2009-02-17T07:43:00.000-06:00

Just thought I would post a quick update on our house hunting. Trying to find a rental house close to church, work and schools, that is in our budget in this town is hard! We found 2 we really liked but they were already spoken for. Darren is going today to check out a duplex that is less than a mile from where we are. Its 5 mins walking distances from a school, 15 to church and stores. Right on a bus route. It has the 3 bedrooms we need and is ok on price. I really hope it will work for us. The only hang up I see is if its too small for all of us. Even with 3 rooms, we still need a big enough room for Mommy and Daddy and a big enough room for Emma and Ella to share a room, Derek well, gosh give him a bed and a few toys in his room and he would be good. :-)

So say prayers, cross your fingers what ever it is that you do that this one will work for us, if not hopefully we will find something soon.

Emma's cold seems to be gone, and she is doing much better. Not too much to share about her, but that is not really a bad thing. Uneventful times with Emma are always great, that means she is healthy and hangin out enjoying life!

Love pics

2009-02-15T09:41:00.000-06:00

In the spirit of the day after Valentine's I thought I would post some Love pics of Emma! Notice how Mommy is not in any of them, because she was taking the pictures! But rest assured Mommy loves Emma more than the world itself. The first pic is Emma at the Dr on Monday, getting kisses from Mimi (Aunt Lisa)and the last two were taken on Valentine's day. Derek giving her bunny ears, that's about as close to affection as he will show at his age anymore and of course the last one is her getting kisses from her sissy!

Hope you enjoy. Emma is still feeling a little icky so she will be resting today, watching nascar with Mommy.

Feb 14

2009-02-14T14:50:00.001-06:00

HAPPY VALENTINE'S DAY TO ALL OUR BLOG READERS!

Update Feb 12, 2009

2009-02-12T10:22:00.000-06:00

Just a short update, sorry I haven't updated lately life has just been busy. Emma is fighting a slight cold. Nothing major, she isn't using oxygen. She is just grumpy and having to be suctioned more. I think we are on the tale end of it now. She has been sick since Sunday night so it should be over soon!

She went back to have her hips checked on Monday and everything looks fine. The doctor will see her again in August for xrays and will also do one of her spine then, because its getting a slight curve and they want to keep an eye on it.

We are still hunting for a new place to move, and I hope we will be able to find something close and within our budget. This place is just to small for 3 growing kids!

Emma finally got the foot piece to her wheelchair on monday so we now have 2 foot rests. I am so very happy about that. Apparently the guy who was trying to deliver them had been knocking on the wrong apartment the last few weeks.

Ella and Derek are doing great too. Derek recently got his report card and did very well, I am so proud. He was tested for the gifted and talented program but didn't make it this year, but that is ok, most kids don't the first year. My nephew Brandon tested twice before he got in. I don't care if Derek makes it or not, I am not even sure what the gifted and talented program does besides put a label on them as being smart. I already know he is smart!

So that's about it for the update, we hope all our readers have a wonderful Valentine's day!

2009-02-08T18:06:00.000-06:00

Hi everyone. We are hoping that some of our readers can help us reach our goal in our March for Babies walk which is in May. We always try to fundraise early, because it never fails that we are pinching pennies to try to make our goal, if we wait too long.

We almost decided not to walk this year. With the economy the way it is now a days, I know that people don't have a lot of money to spare. Then we thought and thought and realized bad economy or not, babies need our help! Over half a million babies born in the US each year are premature. Something has to be done to help these little ones. I did lower my goal from the previous 4 walks we have done, hoping to reach a small one this year, but would love to surpass that!

As you know the girls were 9 weeks too early. Ella was 3 lbs and Emma was 3 lbs 7 oz. both 15 inches long. Ella spent 41 days in the Neonatal Intensive care unit, and Emma spent 66 days, (I think 66 since the days all ran together back then)We are very lucky many babies are much smaller and many stay months and months in the NICU.

The girls will go and get a preemie award in the preemie parade, its a great feeling to hear everyone clap for them. Its the highlight of our year, and just makes us feel like after all that time we spent worrying, that things are finally ok.

So please click on the above widget or the one on the left of the page, which will stay there to help us. Pass this on to your friends if you know anyone that could help donate.

--------------

I am walking in honor of my twin girls Emma and Ella who were born 9 weeks early and in honor of my nephew Gabriel James Lynn Henson who was born still June 9, 2004. I have walked the last 3 years, and will continue to walk as long as I feel I can help this wonderful cause. Many of you have given to my past walks and I appreciate that deeply. I hope some of you will be able to give again this year, and if you can`t that is fine, I just ask you keep me and the other walker in your thoughts and prayers. Our walk will be May 16th this year at Andrew`s Park in Norman.

PLEASE FEEL FREE TO FOWARD THIS IF YOU KNOW SOMEONE WHO MIGHT BE WILLING TO HELP!

Contributing to my march online is fast, easy and secure. You can donate directly from my personal webpage with a credit/debit card or PayPal. If you prefer, I can also accept cash or check. Just click the appropriate box on my webpage.

The money we raise helps save premature and sick babies. Premature birth is the #1 cause of newborn death and the biggest threat to babies’ health today, and through March for Babies, the March of Dimes is funding important research to find out why premature birth happens and what can be done to prevent it.

I’ve joined with millions of compassionate people across the country who support March for Babies each year. Won’t you please help me in this worthy cause? Visit my webpage and sponsor me in the march that saves babies!

With your support, there’s hope.

Anyone see "Fireproof" yet?

2009-02-04T21:05:00.000-06:00

I saw the movie "Fireproof" the other day, its available on DVD and stars Kirk Cameron. I rather enjoyed it and wanted to recommend it to everyone. While the acting was not super Oscar quality it was very heart felt and touching. A wonderful story about saving a marriage with God's help. I don't want to give it away too much, so I won't share details but I suggest it for any married couple it was very touching and the message is strong.

The came out with a book called "The Love Dare" which kind of goes with the movie, its like the book he is given in the movie. I am going to try to hunt it down soon, its looks like a very good read. Even for couples with a strong and happy marriage, we could all use a little reminding sometimes about "do unto others" and lets face it a good marriage takes lots of work! I think the advice in it would be outstanding for those who are having trouble with their marriage. So check it out and watch the movie if you haven't seen it!

Just wondering if anyone had seen it and what they thought.

Beautiful music and update on Donna's baby

2009-02-04T19:09:00.000-06:00

Hey all I wanted to share some music with you. You will have to silence the player on our page so you can hear his player but its awesome music so I had to share. Its by Omnicon which is our dear friend Brian. He is the Daddy to Daniel, the little boyfriend Emma had who passed away. He is also Daddy to a new BABY GIRL who will be here at the end of June or early July. That's right everyone, big update for those of you following Donna's pregnancy. The ultrasound says its a girl! That's her pretty little face up there in the ultrasound pic. No name for sure yet so Ella has nicknamed her Monkey Butt Flower (don't ask!) and it has sort of stuck in our house.

Enjoy the music Brian is such a talented man!

Another snowday

2009-01-28T22:53:00.000-06:00

Tomorrow will be snowday number 3 for Derek due to all the ice. Which is a good thing, becuase no sooner did I write that sentence, did I have to stop and go check on him. He threw up.I am not sure why, he is half asleep and says he feels fine. I hope that stomach flu is not back for round 3 on our house!

It has been so cold, we have just stayed inside. Not much going on anyway. I did get out and go up to the store yesterday, and it was a slippery walk that is for sure. A few cars were sliding and I saw one truck stuck.

I am so glad we have not lost power, like we did back in Dec of 2007. That was a mess. Tomorrow is supposed to start melting the stuff, I sure hope so. We got about a half inch or so of ice and about 2 inches of solid sleet on top of that. The above pic is of a plow cleaning my street, just right up the road from here. I borrowed it from our news paper. I am not taking any pictures myself right now outside, too cold!

We should have our last w2 this week so we can file taxes. I ask that everyone please pray or send us good thoughts so that we may find an affordable place to move close to where we are now. We need more room. 2 bedrooms for 5 people is no fun. Emma and Ella will be sharing a room with any luck and Derek will have his own. Too many arguments have been caused by him having to share a room with Ella, its time they stop being room mates. I want to stay in this area so we don't have to switch churches and so we stay close to the stores. When you don't own a car you have to think about all the changes involved in moving way across town! I will keep everyone updated on our search as we begin to look in the next few weeks.

Reflection, four years ago...

2009-01-27T11:55:00.000-06:00

I wanted to write yesterday, but got a bit busy. Besides, if I wait until today to
post I can add a happy bit to the story.

Yesterday was the fourth anniversary of almost losing Emma. It was the first time she stopped breathing on us, and her heart stopped. She was a little bitty thing back then, not much more than 5 lbs. She had been home for close to a month, trached and doing well. I was sleeping and Dad got up to check on her, change her diaper that sort of thing. Suddenly I hear alarms and him yelling "Get up now her sats are dropping bad!" I ran and maxed out the oxygen, and called 911. In the mean time her pulse ox machine that measures her heart and oxygen read O and O. So Daddy started CPR. I remember screaming at 911 "Hurry Hurry" and "This can't be happening, I am not ready, I can't say goodbye, I am not ready". I have never cried so hard in my life, or been more scared. I prayed hard, and loud and full of tears that God would take me and spare my little girl.

We got her heart going, 911 took her to the hospital and brought me as well. The police car I was in made it before she did, which really made me worry. A chaplin was brought in, that REALLY made me worry. I finally got into see my baby, they had her on a vent, and she was doing well considering. I remember rubbing her hair and telling her it was ok, that I was there. "Mommy's here, Mommy's here baby girl".

My mom came up, they had to tranport Emma to Tulsa to an ICU there because the ones in Oklahoma City were full. They took her by helicopter. My mom and I went to the roof and watched them take her away. I remember telling the EMT if she got scared to rub her hair, that is what she liked. She promised she would.

Emma spent a week or so in the hospital, with no idea why she stopped breathing. Little did I know it would be the begining of a nightmare for the next few months, until we got our ventilator.

Now I did say I could add a happy part didn't I? The Happy news is, with all the scare we had. On this day. Jan 27, 2005 Emma got baptized! Now I am not sure how I feel about infant baptism it wasn't really how I raised, but Emma's brain will probably never allow her to make that choice herself, so I think God makes exceptions for people like her anyway. I really felt a strong urge to have her baptized, I don't know why. Maybe I felt it would give her more a fighting chance? Maybe I just needed that kind of comfort? I don't know really, my heart and mind were in such despair that day. She got baptized wearing nothing but a diaper, by a wonderful nun at St Francis in Tulsa, she did a Christian baptism, not a catholic one. It was just me and Emma, a very spiritual thing that I can't even begin to explain.

4 years later, I can look back and see that I had the worst day of my life followed by one of the most intensely wonderful days ever. God blesses us at the hardest times in our lives, it took me four years to realize that. He breathed life back into my baby girl, in more ways that one. She is here by his grace, and for that I can never say thank you enough.

The above pictures were taken around the time this story took place. The first one was taken 2 weeks later, on her SECOND trip for apnea. Yep 2 trips in 2 weeks, it began the cycle of 2 weeks home and a week at hospital, 4 days home a week in the hospital, etc you get the idea. The second picture isn't dated but I am sure its probably about a week before her first big scare.

Random thoughts on prayer...

2009-01-25T15:29:00.000-06:00

Ever wonder if you are praying for the wrong thing? I was thinking today in church about what I really want and what I am praying for. I watched a show last night on tv called "Prayers for Bobby" about a homosexual man who killed himself after being denied by his family. Not sure how I got to watching it, but I did and it was very thought provoking. Now I am not saying I agree with the things it was about, or that homosexuals are born or not born gay or can change, or anything like that but it got my mind thinking about what I pray for.

When Bobby told his parents his he gay his mother got a therapist and prayed for him to change. To go away from sin and to change who he was to "fix him". Later, after he killed himself she said she should have prayed for his happiness and acceptance . That one scence "I prayed for the wrong thing" got me thinking.

So as I was sitting in church today, getting ready to pray for my daily prayer of "Give Emma a miracle" I realized something. I am praying for the wrong thing! God already gave Emma a miracle. He gave her life. She faught in the NICU and by his grace won, it was his plan to send her home to us. Her heart stopped and he gave her the strength to fight and stay with us. So why am I praying for what we already have?! We already have our miracle.

I have prayed her whole life for God to "fix her" not because I don't love who she is, but because I wanted her to have all the chances the other kids have. No one wants to see their kid with a trach and a vent, its hard. I prayed so hard, thinking like Matthew 21:22 said ""And all things you ask in prayer, believing, you will receive." If I prayed hard enough she would be fixed. But God doesn't always answer our prayers like we think. God hasn't made her walk and talk, but God gave her life, he gave her a chance. That is her miracle. I just had to open my eyes and my heart to God and see he had already answered my prayer.

I believe in miracles don't get me wrong. But I think with a realistic brain too sometimes. Emma has brain damage, nothing will ever change that. I do hope one day with God's help she will walk and talk and do a few things, but I know she will NEVER be normal. I accept that, and its Ok. She is who she is, and she is the best Emma she can be. No disappointment from this Momma, just lots and lots of pride in my girl.

I prayed during my pregnancy for two live babies, after being told there was a 50% chance that one or both would die. Again I prayed for the wrong thing. I should have prayed for for healthy babies, or the strength to handle a "bad" outcome. It was God's will though to send me a daughter like Emma, so I could learn new things and so she could touch the lives of others. I accept that and I actually thank him for that, I know that sounds crazy but I do. Its changed alot of who I am for the better.

So what do I want for Emma? What should I pray for? Of course I will pray for continued health that is a given. But I am going to pray that each day is a blessing to her and that she will bless those who she sees or touches that day, including you blog readers of course! That is all I want for Emma to feel continually blessed and for her to touch the lives of as many people as she can. To make people more tolerant of those who are diffrent, for them to accept her for who she is and for them to feel a little bit of her love. I want people to look at her and not see her machines. I want them to look at her and see her as the miracle she is, she is living proof their is a God and he is very very good. I hope people will see that.

Sorry so long winded, have a lot on my mind I wanted to share. Thank you again for reading and praying for us!

New Look and quick update

2009-01-23T09:06:00.001-06:00

Got a new look! I know the banner is missing some punctuation before the s in girls, but it was such a pain getting it sized that I don't feel like fixing it yet! But I will soon. If you like the actual layout you can find it and many more at LeeLou's blogs, there is a link at the very bottom of this blog, just click the picture. Don't forget to comment and let me know what you think!

Not much going on, Derek and I went to see Dinosaur's Live Walking with Dinosaurs on Wed. It was neat. The dinosaurs are robotic and very very big. One was like 35 feet tall. We had fun, and went to Bass Pro Shop and to the Myraid Gardens and Spaghetti Warehouse, Derek got sick and threw up at dinner. Too bad too because the food was amazing. He missed school yesterday but is doing better now.

Emma's physical therapist Amy has moved on to another company (WE WILL MISS YOU!) and we have been put on a waiting list for therapy at the JD McCarty center. Once they hire someone to take over Amy's case load we will be going again. That may be summer time. I hate to miss so much, but what can you do? We thought of following Amy to her new company, but its home based and we really like going out to JD McCarty, its a good place for Emma to get out and see other kids and for us to meet and socialize with other parents that are going through similar things as us.

Ella is just getting over the stomach flu too, I think everytime we get well someone else gets sick and it starts all over again. I will be so glad when cold and tummy flu and icky germ "season" is over.

Could everyone please find it in their hearts to pray for my friends the Morris Family? Today is the 2nd annivesary of the death of their son Joel. I know it will be a hard day for them. They are wonderful people and I hope the Lord will grant them comofort and strength today.

"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. . . . For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee. "
Isaiah 41:10,

Something from a book I am reading

2009-01-15T00:27:00.000-06:00

I am currently reading a wonderful book called "Recovering from Losses in Life" by H Norman Wright. Its a Christian grief book. I wanted to recommend it to anyway who has lost something in life, not just a death but a job, a home, whatever you need help moving on from. Its great so far. It talks about not only big losses but losses you might not realize you even have. Please check it out.

In the book he quotes another book which is "Loses in Later Life" by R. Scott Sullender. I will have to go find that to read, it looks good, but I wanted to share part of it with you. I really reminds me of Emma and how everyone needs to learn patience and tolerance of those around them. It is a great take on taking a loss and turning it into a gain. Its kind of long, but I hope you will read through it all.

There is a handicapped person in your future: you! Handicapped persons are dealing in the present moment with what you and I will have to deal with later. Sooner or later each of us will have to deal with one or several loses in our health. Then we will travel down the same path that the handicapped person currently walks. Then we will know their pain, frustration and sufferings. Perhaps if we would learn from them now, whatever our age, we would be better prepared for our own future.

Handicapped persons teach us that life is more than a body. They demonstrate the truth of all the great religions that the things that make us truly human and truly divine are not physical qualities. They are qualities of the Spirit. Saint Paul listed a few of these qualities: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control (Galatians 5:22. Jesus listed a few more:meekness, peacemaking, purity of heart, mercy, hunger for righteousness, suffering in a right cause (Matthew 5: 3-10). Neither of them mentioned physical beauty or even physical health. The qualities that save us do not include the shape of our bodies.

Handicapped persons also can teach us how to suffer and how to rise above bodily limitations. Sometimes pain cannot be fixed, nor can all limitations be conquered. Most of us will have to deal with pain and limitations, at first in minor ways and later in major ways. We will learn new meanings for the word "courage". Either we will rise above our limitations and learn to live with them or we shall sink to new lows of despair, bitterness and helplessness. The choice depends largely on the strength of our courage.

In a sense, then, a handicap or loss of health can become a gift. It never starts out that way. Initially it is a horrible loss. If through the loss, however, we can nurture our spiritual qualities and learn the art of suffering well, then we will have transformed our loss into a gain. We will have grown in and through our loss. We will have risen above our loss precisely by not letting it defeat us, but by letting to propel us forward into a more advanced stage of human existence. Admittedly, not everyone makes such a major leap forward. Neither have some human beings made it past a Sunday school theology. Yet, the loss of health in later life, as horrible as it seems, can be the opportunity for growing toward an ever greater level of spiritual maturity.

Not Double Trouble but twice blessed...

2009-01-11T13:51:00.000-06:00

Anyone that knows me, knows as a twin myself I never really thought the idea of having twins sounded all that fun. But what a blessing it has been to have Emma and Ella. They have a very unique relationship and I love watching it grow every day.

Ella is always trying to help take care of Emma, or running over to talk to her, and doesn't think twice about wiping Emma's drooly mouth. She loves to kiss her. The other day they sat on the couch with a toy and Ella moved Emma's arm to help her play with it! It was so cute, and she was very gentle.

Here are a few pics of the girls I snapped.