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.

8 comments:

Rachel E. said...

I'm so glad you were able to take your trip and have a great time with Josh's family! WOW, those rocks certainly were big. Praying that Luke will stay healthy while you're away with your brother-in-law and his family.

Michelle said...

How fun to go on vacation. Mo looks like a really pretty place! Remember, you can try what Dr C says, and if you don't like the results, try something else. He'll work with you. We did a lot of swim therapy with Emily because it worked pretty good for her tone. Doesn't keep it down, but it did help. Have you thought about Dorsal rhizotomy? We didn't have to do this with Emily because she has partial paralysis from the waist down. Also, she had Girdle Stone procedure to repair her severely damaged hips due to Arthrogryposis. Once her hips were taken care of she wasn't tight anymore.
Praying for you guys to stay well!
Michelle

Teena said...

So glad you were able to go. Love the pics!

Praying for all this with Luke... also praising for the good news! :)

We do need to chat for a long time and catch up. I think about you lots....

HUGS
Teena

Anonymous said...

Sounds like your trip to Missouri was wonderful! GOd is sooo faithful. What a praise about Luke's weight and his lungs! We will continue to pray for his flexibility and God to give you and Gordy wisdom in those relating decisions. Love ya! mary

ParkerMama said...

Okay, how much fun have you been having? ;)

I'm so glad that you've been able to make your trip! Yippeeeee!

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dr_bristow said...

Looks like you had a great trip to Missouri! Praise God!
Luke makes such a cute little ring bearer. In fact all your kids' costumes look great!
I'm praying specifically for Luke's tightness, that God would perform a miracle even right now and loosen Luke up!