Update on Tuesday

OH the face of this sweet baby....we had a big day yesterday. So I thought I should update everyone and this is my favorite photo of her so I had to put it in.

We saw her Nutritionist, Cybil, Regan has gained 1 lb and 3 oz in the past three weeks. That is really great...we are going to continue with the changes we have made to try to get her weight up. So that was good news. We want to continue on this track...Cybil does a great job figuring out all the details.

We also saw her pulmanologist Dr Johnson. She passed her over night test that they ran a few weeks ago that show that she does not have any significant sleep apnea. He thinks she is doing better than they expected. We will continue doing what we are doing. He is a very nice man.

We also saw Dr Karkos who is a special needs specialist. She went on and on about how much better Regan looked than the last time she saw her in April....that is good! She made several suggestions that will all be helpful for the everyday care of Regan. She is such a blessing.

This appointment took a long time but we are always glad to get a lot done at one visit.
Please continue to pray for her strength. She is awake more than she was....we have reduced her keppra to a lower dose and that seems to have helped. Her seizures are up and down but are more severe than they have been in a few minutes. This was going on before the reduction of the keppra so we don't think they are related.
School as started we are so glad...Ryder and Rylee are loving life...such a blessing. Ryder loves Junior High...it seems he like all the responsibility.
He has some new extra curricular activities that he is enjoying. This was their first day of school picture. (We have entered the don't make me smile in every picture phase.)
Rylee loves her teacher and is excited about seeing her friends. She loves Math and is considering playing Volley Ball this fall. We will keep you updated on that!
Brian is getting in the groove at work. Learning so much and reaching to be all God wants him to be. Thank you all for your prayers and support.
We feel strengthened for the journey.

Bloomin' Hope

For all of you who faithful read the blog you will remember that a rabbit ate my Black-eyed-Susan's.......still pains me to remember. I wanted to you see what started blooming there this week.
Those flowers are coming back....I thought they were a lose for this season but with time they have re-bloomed....THEY ARE RENEWED! So it has had my brain spinnin' about renewal of hope. To be renewed...."to make like new : restore to freshness, vigor, or perfection renew our strength in sleep" (this is according to Merriam Webster anyway)......oh how I long to be restored to freshness....to be made like new....it is on my mind because sometimes I need my hope renewed. I need my hope to be make like new in vigor. This some days my cynical heart gets the best of me, some days my tired flesh wins out, some days my mind just spins in unbelief. On those days days I need a renewal of hope! A few mornings ago God reminded me of Romans 15:13 "May the God of HOPE fill you with all joy and peace as you trust in him, so that you may overflow with HOPE by the power of the Holy Spirit."

He filled me with hope by blooming those flowers for me. He reminded me that I had given up on them but wasn't done...he had more in store to teach me with those silly little things. These verse reminds us that when we are filled with the God of HOPE then we overflow with hope.....I want to overflow with hope.....not with other things I sometimes overflow with. I know this is a matter of heart...some days I just don't let myself trust in Him...I make the decision I can handle life on my own. That I already know how life works, how people work, how I work. I sorta say inwardly ...."see that is the way it goes.." as if I know better than HE. Sometimes I just forget that hope is from God when we trust in Him.....God's action is the HOPE my action is the trust.

Regan brought me a flower home for Mother's day...it was just a little green steam sticking through dirt in a Styrofoam cup. Julie and I cried the day she brought it home because we weren't sure if Regan would be with us on Mother's Day. I put that little stick in the ground to see what it would do. Honestly I didn't think it would do much....but guess what...

It it the biggest and brightest plant in my yard.....I'd say it is overflowing with HOPE!
I pray today you will renew your trust today then I know He will fill you with renewed Hope...and I know you will overflow with Hope for all the world to see....and maybe even be surprised by!

8 Random Facts

I've been tagged by my friend Mandy to list 8 random/weird facts about myself on my blog...so here they are. (You can read Mandy's facts on her blog...I love the baby food one..that always makes me smile.)
1. I love reality TV (yes I know it is not real....)
2. I've been arrested twice.
3. I love to do laundry....I think this has to do with my childhood but doing laundry makes me feel responsible, motherly, and productive.
4.I worked in radio for almost three years while in high school. Getting paid to talk....a great job for me!
5. I was in in the "Miss Clinton" pageant when I was 18. it still cracks me up! I rocked in interview...but even then my thighs looked way to big in a swim suit!
6. I think fruit snacks smell like chap stick so sometimes I want to eat them because I ate chap stick as a child then other times they make me feel like I could throw up!
7. I love paradoxes.
8. I really love college students......really I do.....I DO!

I tag my mom, my mother in law Vera and my friend Parian....( you can just add it to to published comment since you don't have a blog....this will be fun....I wonder how long it will take?)

I am sorry for all of you who came to the blog today expecting something spiritual I hope you don't think less of me! I guess since it is all truth it is at least godly.

A Psalm from Ryder

Hi....this is Ryder. Last night I had a hard time falling asleep so I decided to write a psalm. So my mom thought you all would enjoy reading it. Here it is...

"In whom shall I put my Trust when Fear stalks me like a predator ready to strike and Anger lurks in the shadows, preparing to burst forth? In whom shall I put my Trust when Faith in things of the human world has failed and Happiness is but a memory? Whom shall call to me and rescue me from the Shadow Lands? Whom shall awaken me? The LORD."

"Whom shall cheer me when sorrow creeps in like fog and envelops me? Whom shall reassure me when uncertainty clouds my mind? The LORD."

"Whom shall pick me up when I have fallen? Who is my rock on which I stand? The LORD"

All In A Day's Work

We have always known that when God knew what Regan's journey on this planet would look like he knew Rylee and Ryder were up to the task. As they grow up we continue to have that truth confirmed. They know they love her but they don't see how amazing suited their gifting is for this particular task.

"For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do." Ephesians 2:10

Saturday night Ryder and Rylee were watching a movie with Regan while Brian and I hung out with some friends on the back deck. I came in every few minutes to check on Regan but Rylee knew she was to "babysit" her even though I could seem them both through the back sliding glass door. About 10:30p Rylee said "Ryder get mom and dad Regan is choking"......I was already up before she finished the sentence with Brian right behind me. As we came in the room we could see Regan's face was completely blue and she was struggling with no avail to get air into her lungs. Brian and I began suction and put her on oxygen. Within 10 minute we were giving her a breathing treatment. Ryder was helping his dad get everything all hooked up. Ruthie our friend helped by holding Regan's head back for a clear airway while I suctioned.....we all worked as a team. With God's indwelling power we saved Regan's life.

This week has been hard because she has been on round the clock breathing treatments and she is back on oxygen. When I took her in on Tuesday for her appointment according to the Diane our nurse "she sounds clear". That is amazing considering that at one point there was no air in her left lung.

If Rylee had not responded as quickly as she did we would have had a very different looking week. Each time I want to complain about being tired I am I just remember that I am so glad that Regan is here with me and that I have her here to give a breathing treatment to. This is better than the alternative. We will keep you updated as things change but she is doing better each day.

As Brian was tucking her into bed on Saturday night he was telling her how proud he was of her for really paying attention and for being a quick thinker. She said, "Ha, I saved Regan's life and even the doctors couldn't do that!" He told her that he felt bad because he and mama weren't right there with Regan. Rylee said, "Why did you and Mama need to be right there...Regan was with me...she didn't want to be with the adults she wants to be with me. We were playing footsie, nose kisses, and snuggling...I even moved Regan's chair so she could see the movie better." Rylee is right....Regan is right where she needs to be....right here with us... with a big sister named Rylee who just considers saving her sisters life no big deal because it is all in a day's work.

Our lil' Regs

Regan is here with her good friend Kate all "cuted" up for the Logan County Fair. We went on Friday morning to see the stinky animals and mostly eat some fair food for lunch. They are so cute in their shades. Regan and Brian didn't make it long because there was so much mud and poop everywhere that it was difficult to get Regan around. Oh well we tried

After the Fair Brian took Regan to get a blood draw...her first since April. We are trying to get this draw done before we go in for her doctor visit to see Diane, Regan's neurologist assistant. Diane knows Regan better than any other medical professional so it will be good to go see her.
She is going to help us figure out what our next move should be.

We also visited with Dr McKenna a few days ago. Regan had an ultrasound and we found out she has three kidney stones..up from two in January. That was very disheartening. We will go back to see him now every three months.

While visiting with Dr McKenna I took Regan to get weighed...she is down to 30 pounds...this is not good. We will go later this month to visit with the dietitian about what we need to do to get 10 lbs on her.

We are also going to see Dr Johnson our pulmanologist. They are going to do an night time oximeter study to get a more through read of her breathing. We hope this will give us explanation of why she is sleeping so much.

We have also decided to keep Regan home from school this year. She is sleeping so much that there is no point in making her go.

sooooo all in all this has been a crazy week couple of weeks for Regan. It is disheartening to go to appointments that only reveal bad things...it has been nice to be away from that for a while. But it is time to back to some doctor appointments for her. I know many of you pray for her everyday....so I wanted to give you some things to pray specifically for.

Hosea 6:1-3 1 "Come, let us return to the Lord. He has torn us to pieces but he will heal us; he has injured us but he will bind up our wounds. 2 After two days he will revive us; on the third day he will restore us, that we may live in his presence. 3 Let us acknowledge the Lord; let us press on to acknowledge him. As surely as the sun rises, he will appear; he will come to us like the winter rains, like the spring rains that water the earth."

(This is Regan watching a movie with her cousin Ashlyn at Grandma's house..oh and her Webkin too! This was taken in July 07)