Wednesday, October 28, 2009

UP, DOWN, UP, DOWN, UP, DOWN, we feel like we been riding Tetter Toter this past week:/

The Lord blessed us with a wonderful trip to MO. It was beautiful there as you can see by the pictures I've posted below. Natalie and Josh's reception was great, the food was delicious and Josh's family were all so very nice. Both services at church on Sunday were awesome, just what I needed to hear, God knew we needed to be there and I'm so glad we trusted Him to take care of Luke and our children, he was faithful in keeping them all healthy and happy while we were gone.

Here we are doing a Geo-cache at the beautiful Hahn State Park, yes we did climb up that rock cliff only to realize we had passed right by it below.

We also went to see to Elephant Rock State Park, you have to see these rocks to realize how really big they truly are!

We spent our last day at the St. Louis Zoo, it was so much fun reminiscing with Josh as he told us stories about when he was a little boy going around that Zoo.

Our plane landed on Monday night and we took off "running" to a very busy week. Tuesday was going to be a chore day, but ended up being a bit stressful as Luke was coughing out blood. My sister Jill just happened to come over that day and she thought I should take him into the Dr. so I called and they told me to take him to either the ER or Urgent Care. But Praise God, He had other plans, Jill and I prayed for Luke to stop coughing up the blood and God answered our prayers. After waiting a few hours and seeing no more blood I called back the consulting nurse and asked her if she still thought I should take him in, she consulted with the on call Dr. and they decided that we didn't need to take him in unless he began again. God is so faithful!

On Thursday I took Luke in for his annual check up at his Gastronologist and for the first time since Luke's accident Dr. A told us that he was at a perfect weight, that he looks great and his g-tube is at the perfect place still. I wanted to stand up and shout Hallelujah, but I refrained, it was so refreshing hearing this news as last year we were told that he needed to gain weight. After we left that appointment we went straight to his Pulmonologist and were once again blessed with good news. For the first time that I can remember, Dr. R said that Luke sounded good, this is not the norm, in fact I can't ever remember this happening before. Dr. R told us that we do not need to come back for another year, Hallelujah!

I wish I could say that our good news continued on Friday, but this would not be true. Friday Luke had an appointment with his Rehab Dr. and this Dr. didn't have good news to tell us, in fact it was quite grim to be honest. He said that Luke is one of the most puzzling and tight child he has ever seen. I was thankful that Dr. C took almost an hour to talk about all the different options we might still have for Luke. We decided that we are going to try Botox in his quads to see if Luke can relax enough to get his legs bending again, we are also going to go to a full dose of Dantrolene, which is a muscle relaxant, I'm praying that we don't completely lose Luke's cognitive levels by taking it up that high. It's such a balancing act, knowing that Luke desperately needs help with his muscle tone issues, but at the same time not wanting him to sleep all the time.

Saturday evening we went up to Starlight's Trick or Suite at the Embassy Suites in Tukwila. The kids had a blast dressing up, can you tell what they are? Just in case you can't Lily was a 1980's aerobic instructor, Luke was a ring bearer, Ezekiel was Le Beau from Hogan's Hero's and Isaiah was Clark Kent, aka Superman. There was games to play, candy to eat, prizes to win, crafts to be done and then to top off the whole night we got to stay in one of the Suites all night long. The next morning we actually slept in and went swimming after a late breakfast, it was so relaxing!

And last but not least yesterday we went up to Seattle for the Annual Starlight Fundraiser luncheon. The kids held up signs thanking the people for coming, passed out the programs as they walked in to be seated for lunch and then helped to collect the money at the end. Lily was so excited she absolutely loves Starry and was following Starry around where ever he went.

I really do need to post more often I realize this blog entry is way to long, if you made it this far you really are a faithful follower, thank you.

Love in Christ,
Luke's Mommy Suzi

PS On Monday my sister Lori's husband Lonnie, lost his father to cancer. Praise God we are assured that he is heaven. Would you please keep his family in your prayers as they grieve. Tomorrow I will be driving with my parents over to be with them and stay until Saturday after the memorial service, would you say a prayer for our safety as it has been snowing in the passes this past week and for Luke to continue to stay healthy while I'm gone?? Thank you.

Wednesday, October 14, 2009

Your prayers are once again making a HUGE difference!

After a call from Luke's Pediatrician we decided that we should take him to Urgent Care, as mentioned in my last post he had a horrible day today. Once I got off the phone with him I started making some phone calls for prayer, posted for people to pray up on my Facebook status and of course asked for prayer on the blog. God is faithful and Luke began to make another one of his amazing recoveries. As of right now, his heart rate is back to normal, no more fever and he's on a little bit of oxygen.

Gordy and I in faith are just about done packing for MO, we have to leave our home around 11 a.m. tomorrow, as long as Luke is still doing good that is. Thank you so much for your prayers, they have made the difference once again. Gordy and I will be gone until Monday night, please continue to pray for Luke, along with Amy, Isaiah, Ezekiel and Lily as they stay home. They will be home with Amy two nights and then are going to spend the night at their Auntie Jill's and Tia Yoli's home.

Love in Christ,
Luke's Mommy Suzi

P.S. Here is a video put up on the HUGS website of various children who have all had near drownings, as you will see Luke is in it twice.

Luke took one step forward yesterday and then two huge steps back last night.

Luke is not doing well again today, the mystery of Luke is coming through loud and clear. Last night his fever started to shoot back up and his need for oxygen. Today he was been back to where he was two days ago. He was better yesterday, so this was a huge whammy. This morning while I was picking him up out of the bathtub I threw my back out, it was the worst pain I ever remember having, I was unable to stand up and walk for at least 30 plus minutes. Finally after taking a muscle relaxant and Ibuprofen and a long nap, I was able to stand up and walk again.

Beside Luke being back to extremely sick and my back going out, we are supposed to leave tomorrow morning for MO. I have so much to do today, I can't even begin to see how this trip is going to happen. With faith I am believing that we are going tomorrow, but my fear factor is working it's evil work in my brain. We are desperately needing to rely on those that have faith to believe in the miracle of Luke getting better today and my back to where it needs to be able to walk to my plane tomorrow. Bottom line WE NEED PRAYER!!

Love in Christ,
Luke's Mommy Suzi

Tuesday, October 13, 2009

What a difference a day makes, or perhaps I should say what a difference your prayers make:}

Luke is doing quite a bit better, thank you so much for your prayers. I took him in yesterday and the x-ray did show that he does have pneumonia. His lung x-rays are hard to read because his lungs are never completely clear. It was an extremely hard day on both of us. He was so sick as mentioned, then when I picked him up to get his x-ray done I accidentally pulled out his g-tube, quickly I had to lie him back down and sterilize it with some alcohol wipes they had there and put it back in. Then once we were in the Dr.'s office I was suctioning him and he gagged and threw up all the Ibuprofen I had just given him, I had to change him completely as he got it all over himself. After that he had to get a very painful shot, he yelled and cried the whole time they were giving it to him. My heart was so heavy for him as I had to watch him suffer the entire day.

Praise God for new days. I just checked his numbers a bit ago and he was at 98% -100% oxygen levels and his heart rate is back to normal and no fever. The only answer for such a quick turn around is all the prayers, thank you so much for taking the time to pray.

Alane asked how his baclafen pump trial went. One of the reasons I have not posted anything about it is because I felt pretty hopeless by the time we left the Hospital that day. While Luke did get a bit more relaxed I'm not sure if this is something we want to pursue. I will be taking Luke back to his rehab Dr. next week and at that time we will be discussing possibilities for him. I know that I've been asking for years and years now that you would pray that Luke's legs would bend again and that his tone would get better and here I am once again pleading with you all to pray specifically for Luke's muscle tone to get better. I feel like we've tried everything possible thing that we can do and now the only thing left is just to wait upon the Lord, while this is so easy to say it's not an easy place to be in. I'm a doer by nature, it's so hard for me to wait upon the Lord, but I know I have to it is our only hope for Luke.
Today is Amy's 22nd Birthday! Wow, where does the time fly, she was just a little girl yesterday and now she is all grown up. I could not be more proud of my sweet dear daughter, she has gone beyond the call of duty in our home. She is currently at the YMCA teaching swimming lessons to Lily's class so that she can be in there during this hour. She is the Children's Pastor at our church, her heart for reaching young children for the Lord is amazing. She is an great cook and is such a talented artist. She is in her second year of an internship program at our church by the time she is done with the class she will be ready to take her exam to be licensed in the Foursquare church denomination. She is beautiful, not only on the outside, but more importantly on the inside. I hope you don't mind that I take this time to brag about Amy, but she deserves it!

Love in Christ,
Luke & Amy's Mom Suzi

Monday, October 12, 2009

High Fever + Low Oxygen Rates = A very sick Lukie Boy that needs some prayers today

Luke could use some prayers today. He is very sick, his temperature has been up to 104 plus today and of course his heart rate is soaring way to high. His oxygen levels have been all over the map, from 100% down to 87, right now he is on 2 liters of oxygen and is hanging out around 94. Zeke was sick last week with croup and now Lily is also coughing, I'm sure Luke caught whatever they've had. I'm taking him into the Dr. this afternoon, hoping that he will have an answer to what is going on.

Gordy and I are supposed to go with Josh and Natalie to MO on Thursday for a small informal wedding reception and to meet all his family. I don't know why but it seems that whenever we are about to go somewhere Luke gets sick, please be praying that whatever is going on with Lukie boy today that he will recover quickly and that we will still be able to go to Missouri.

Thank you,
Luke's Mommy Suzi