Sunday, November 25, 2007

I'm Thankful For You, what are you thankful for today?

I hope that you all had a wonderful Thanksgiving Day. Our family had a great day, we ended up eating over at the church annex, which was a great idea since we had 32 for dinner. After dinner we all came over to our home to visit, play games and of course eat dessert. Luke's day started out kind of difficult as he was on oxygen until about 1:00 and then thankfully we were able to wean him off the oxygen and take him over to the church. This week though he has been battling with the cold that Lily gave to Natalie and Natalie shared with Luke. He has been very congested and sleeping a lot this week and had a few very hard nights, but thankfully tonight he seems to be doing a little better.

Here is the list I promised in my last blog.
I'm thankful for:

  • First and foremost for my faith in God. He is what keeps me going each day, always renewing my strength, touching Luke, keeping me focused on what's important in life.
  • My wonderful husband, he's been my best friend for 25 years, always offering a shoulder to cry on and a person to laugh with, he's done an awesome job of providing for our family and he's a great father, showing the children a great example of a Godly man.
  • My incredible children, Daniel who is great at offering a listening ear and helping hand, Amy is a wonderful teacher, cook, driver and who offered to start wrapping Christmas presents today, Natalie always the servant willing to help pick up each evening, teach the boys, and a great cook too, Isaiah who is a little organizer and is getting better a picking up more of the chores each week, Ezekiel who loves helping with both Luke and Lily and is currently teaching Lily how to color in the lines, Luke who brings smiles to each of our faces as he is usually such a smiley guy, Lily who as her middle name expresses brings Joy into each of our lives and she's also getting pretty good at learning how to help pick up her room.
  • My parents who volunteer to come over to help around the house at least once a week and blessing us often with delicious home cooked meals, but most importantly spending many hours a week praying for Luke and our family.
  • My sister Cindy who comes over to help get Luke ready for the day at least two mornings a week. Also my sister Lori who willingly comes over to watch Luke and Lily when I need her. Last but not least my sister Jill who came to spend Wednesday night with us so that she could teach Natalie how to cook a Turkey dinner, so that I wouldn't have to get up early on Thanksgiving Day.
  • My great friend Yoli who so often volunteers to watch Luke and Lily, who also took me to the Hospital after my fall down the stairs and ran Luke and I to appointments last week when I was unable to drive and carry Luke around.
  • Our dear friend who willingly fixed our van for free last week.
  • The Ksen family for taking our family out to Dinner last week.
  • Matt the Rolfer who came to our home on Friday to work with Luke, so that we wouldn't have to make that long drive out to see him.
  • That Luke has not been to the Hospital in over 19 month's and that God has kept him pretty healthy for the most part during that time.
  • That my ankle is feeling so much better in fact I was able to go for a walk and bike ride today.
  • I'm thankful for all those people that still follow Luke's blog faithfully and have not given up praying for Luke and our family.
The danger in writing out a list like this is the fact that I've probably missed someone, if so I'm very sorry, just know that I'm thankful for all that have made this journey that we've been on for the last 3 years easier.

Last but not least I would like to ask for prayer for two families: If you follow any of the Prayer links listed to the left you've probably prayed for Gail. I just want to ask you to keep her family in your prayers as she passed away a few weeks ago from the brain cancer that she had. Also please keep Madeline in your prayers, she is a sweet little 3 year old that is currently in the Hospital. She is once again in critical condition and needs a miracle from God. I was able to meet her and her parents and they are some of the sweetest, most amazing people I've ever met. Their faith in God is amazing and unshakable, they have taught me more than I can begin to express on this blog.

Be blessed today and if you get a minute I would love to hear what you are thankful for today.

Love in Christ,
Luke's Mommy Sue

Wednesday, November 21, 2007

We hope that you have a Blessed Thanksgiving Day

So much has happened lately where do I begin?? First of all thank you for your prayers for my ankle it is starting to feel much better, though I think I did too much today as it is very swollen tonight. I've never sprained my ankle before so I've been surprised that it hasn't healed a lot sooner. When I fell, I really did a number to my back and yesterday I had the worst headache that I've had in a long time, I went to the Chiropractor and found out that along with spraining my ankle and knocking my back out of whack I also suffered whiplash. Enough about me, please just keep praying for a complete healing, thank you.

Luke has been doing pretty good lately, though he was really sick on Sunday night. We went out to dinner with Daniel's girlfriend, Kristin's family to meet her grandparents on Sunday evening not realizing that Luke was sick. I thought to myself that he was looking pretty pale when we were at the Restaurant and when we got home realized just how sick he was after finding out his temperature was at 103.5, his heart rate in the 170's and his oxygen levels in the the high 80's. Needless to say we got him on oxygen right away, gave him some Tylenol and called my parents to get some prayer going. After getting him up to 3 liters of oxygen and anointing him with oil, he finally began to do better. The prayers really did the job once again, as by the time we went to bed he was down to 1/4 liter of oxygen, his heart rate was in the 120's, which is still high but better and his fever was down to 99 degrees. Monday he was fine, except for the fact he been a bit "junky" in the chest and nose.

Monday night I found out that Luke will no longer get any more therapies this year as we've maxed him out. He only gets 60 PT, OT, ST and massage appointments a year. I'm thanking the Lord that I called the place he goes for PT and OT, to find out how many he had for the year, because he was at 51, along with his 9 Vital Stim therapy, which is classified at ST we are completely out of visits. I have a bit of mixed emotions about this in the fact that part of me is happy because we have two less days of running around, but also a bit bummed as I hope and pray that I will be able to get enough time in my week to do all his Range of Motion exercises. I'm also praying that I didn't miscount and end up with a huge bill, as it is we already pay $32 a visit.

This past week has been a week of some extreme challenges, but mixed with some very unexpected blessings. I will blog again in a few days to share with you all the things that I'm thankful for, which seems to be so much lately. Please have a wonderful Thanksgiving Day, I pray that you will be blessed with a Day filled with joy and goodness.

Love in Christ,
Luke's Mommy Sue

Friday, November 16, 2007

Quick update

I thought I better update everyone on How Sue is Doing, sounds like a blog :)

Seriously, As you know Sue severely sprained her ankle when she fell down the last few steps of our stairs. She is using crutches and was not putting much weight on her ankle She has been spending most of her time resting and reading on the couch.

Yesterday the ankle felt pretty good and she decided to put a little weight on it. For the most part it worked well for a while, although last night she was in a little bit of discomfort.

Thank you for praying, it is making a difference. Our family is adjusting to having mom immobile. At times I dont think Lily understands as she will do something around Sues ankle and Sue tries to explain to her that mamas ankle is sore.

Sue will blog when she feels up to it

Thank you all,


Wednesday, November 14, 2007

Please Pray for Sue

Sue needs your prayers. Last night she severely sprained her ankle. Yesterday afternoon she was leaving the house and missed the last step and fell. She was in so much pain that we thought it was broken. We took her to the hospital and they did an xray and told her it is just severely sprained. She is on crutches and has not been able to put any weight on it so far.

As you know from reading this blog, Sue is extremely busy going here and there with Luke and all of the other activities of life in a large family.

Please pray that Sue will rest and her ankle will heal completely and quickly. Also, pray that she will be blessed as she rests and recuperates.

When she feels up to it, I am sure she will blog.

We appreciate you very much,


Thursday, November 08, 2007

Is anything too hard for the Lord? NO

Just to let you know Luke has been struggling a couple of days with what seems to be a bit of a cold, he is congested and has a runny nose. He didn't really need any extra oxygen until last night and again tonight. He has been doing a great job eating through this sickness which is a blessing, today during his vital stim therapy he ate at least 25 bites of food, the most he's ever eaten. His Speech Therapist was very excited about his great swallowing. She also started bringing pictures of food so that he could make choices to let us know what he wants to eat. He did a pretty good job of looking at the picture of the food that he wanted to eat each time.

Once again my favorite devotional Deserts in the Stream has ministered deeply to my soul, I'm praying that you too will find comfort in reading this passage:
Is anything too hard for the Lord Genesis18:14

This is God's loving challenge to you and me each day. He wants us to think of the deepest, highest and worthiest desires and longings of our hearts. He wants us to think of those things that perhaps were desires for ourselves or someone dear to us, yet have gone unfulfilled for so long that we now see them as simply lost desires. And God urges us to think for even the one thing that we once saw as possible but have given up all hope of seeing fulfilled in this life.
That very thing, as long as it aligns with that we know to be His expressed will - as a son was to Abraham and Sarah - God intends to do for us. Yes, if we will let Him, God will do that very thing, even if we know it is such an utter impossibility that we would simply laugh at the absurdity of anyone ever suggesting it could come to pass.
"Is anything too hard for the LORD?" No, nothing is too difficult when we believe in Him enough to go forward doing His will and letting Him do the impossible for us. Even Abraham and Sarah could have blocked God's plan if they had continued to disbelieve.
The only thing "Too hard for the LORD" is our deliberate and continual disbelief in His love and power, and our ultimate rejection of His plans for us. Nothing is impossible for Jehovah to do for those who trust Him.
from Messages for the Morning Watch

God is so good to remind me not to give up on the miracle of Luke's complete healing. Sometimes as mentioned in my last post it's easy to get discouraged that his healing hasn't come in my timing. I realize that God's timing is perfect, therefore I have to come once again to completely trust that God knows what He is doing. Finding peace in His timing is so comforting.

Please pray that Luke will get better soon. Also be praying for his muscle tone issues, we have some Dr. appts. coming up to discuss what to do, we will need great wisdom in making the right choices for Luke. One last prayer request is for myself, I'm really having a hard time getting to sleep at night, therefore I'm not getting very much sleep each night, please pray that I will be able get to bed earlier and go right to sleep. Thank you for your faithfulness, you are amazing!

Love in Christ,
Luke's Mommy Sue

Thursday, November 01, 2007

Still hanging on for Dear Life to what seems like a never ending Roller Coaster Ride

I continue to be amazed at how last week could be so very awesome and this week so very hard. Luke has been doing so well, making huge steps toward recovery. I was just saying today to the Speech Therapist he has eaten more orally in the last week, then in the total of the last 3 years. I realize that sounds like he is eating a lot, but for Luke a lot is 3 whole jars of baby food, plus some other tastes. But to be honest I wish he was eating all his food by himself.

Tuesday was a hard day for me. It began with Physical therapy, then on to Occupational therapy, took Luke grocery shopping, got home just in time to help get the home ready for company that night, Luke's old nurse Mary came over for dinner. Then we were off to his Pediatrician appt. I decided after hearing his alarms going off every night for weeks, because of his heart rate dropping I better ask the Dr. just how low should we let his heart rate get before we become concerned. It has been getting down in the low 50's some nights. He requested a EKG to be sure his heart is okay, which turned out normal. The Dr. said as long as Luke's oxygen numbers are good, we shouldn't be too concerned about his low heart rate.

I guess what made this day so hard was the fact that everyone that day felt like they had to give me a reality check on Luke's life. Letting me know once again, that I really should be thinking about ordering him a wheelchair. Also discussing the fact that they don't think knee orthodics would benefit Luke, in fact they could cause him to break a bone, because children like Luke are prone to broken bones. Thinking about the future of communication devices for Luke. Then his Dr. told me that Luke doesn't qualify for a Make a Wish trip, I guess there was a small part of me still thinking because I know of so many other children just like Luke that have gotten to go that perhaps he would get a "Wish". I don't know why, but that really devastated me. None of these things are negative things I realize, except for the fact I left those appts. wondering if I'm just living in a dream world about thinking that God is going to heal Luke someday.

Here's some real honesty for you, Tuesday night I spent about an hour on my knee's literally crying out to God letting him know how tired I am, physically, emotionally and spiritually. Asking God for forgiveness because there are days when I'm just not sure if I have the stamina to continue on this journey we are on, wondering if I really have the faith to believe that Luke is going to be healed. Usually I go to bed with some resolve to know God has heard my cries, but this night I finally fell into bed around 3:00 a.m. not feeling any better after my time of great pleading to God. I woke up Wednesday morning not wanting to get out of bed, can you say great depression had set in? I finally dragged myself out of bed knowing that I needed to get Luke into the tub and fed, as I was already running way behind on the day's schedule.

Halloween has been very hard these last few years. I don't have any stamina to get my children dressed up in costumes for our yearly harvest party at church. Once again if not for my wonderful girls this year would of been a total flop for our family. The girls not only fed the kids breakfast, but made sure they were all dressed and did school with the boys, when they finished with school, they carved the pumpkins that we got a few weeks ago. They got the kids ready for the party, then ran over to the church to help get the last minutes details done before the children arrived. I did end up going with Luke, who was dressed in a lion costume, I know that he really enjoyed himself as did the rest of the family.

The pictures tell a story about a Lady named Natalie who thought she was a princess for the night, Luke her Lion pet growled to scare off her Jester Isaiah and Clown Ezekiel. Lily who spent the evening as a little "Lily Bug" was the cutest little bug, you ever did see. Daniel's girl friend Kristin saved the day dressed up like Super Girl and then last but certainly not least Amy helped plan and put together the entire party with her Aunt Cindy. A good time was had by all!

Ezekiel was very persistent in bobbing for apples and as you can see it paid off in the end.

Today was a bit better, I woke to an e-mail from Luke's PT saying that someone she knew was giving away an Adult size special needs jogging stroller. That was great news as I was just pricing them the other night at over a thousand dollars, thank you Lord for your provision. The night ended celebrating Ezekiel' s 7th Birthday, with a party at Chuck E Chesses. A good time was had by all, though Luke seemed to be congested the entire evening and came home with his first fever in over two month's. I'm praying that it will be gone when he wakes up in the morning.

I'm so encouraged by your sweet comments and often don't feel worthy to live up to some of them. Thank you for your continued prayers and support, I'm confident to know that God will renew my strength once again and encourage me as He always does, please join with me in prayer that it will happen quickly.

Love in Christ,
Luke's Mommy Sue