Tuesday, April 28, 2009

Videos about Daniel

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"

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.

Sunday, April 26, 2009

Restful night for Emma

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.

Saturday, April 25, 2009

ER trip

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.

Wednesday, April 22, 2009

Prayers needed for another little friend--desperate!

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

Tuesday, April 21, 2009

Our little friend needs prayers

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

Prayers for Stellan

Sunday, April 12, 2009

To all parents of special needs kids

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!

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.

Friday, April 10, 2009

April 10, 2009

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!

Wednesday, April 08, 2009

April 8 2009

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!

Sunday, April 05, 2009

Happy Palm Sunday.

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.

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