Wednesday, November 26, 2008

New Emotions emerging everyday!

Luke has been doing great lately, despite the few rough nights he's had, which are probably rougher on Mom and Dad than on him. He has been so much more limber lately, his OT is going to have his current wrist orthodics fixed so that it gives him more of stretch. We've also been talking about doing knee orthodics once again, I'm not sure where that one will end up though.

Something really exciting happened yesterday during his OT sessions. His OT was letting him play with hitting a switch pad to make cars go around a car track. All Luke has to do is barely touch the pad and it will go. Needless to say Luke was touching it and then letting it go, sometimes on command and then he began to get loud, Eric his OT said that he thought Luke was frustrated because his hands weren't working quick enough for him. This is the first time I've seen Luke get upset like this because he was unable to do something. On the one hand it's heartbreaking to see your child cry because they are unable to do what they want, on the other hand it is a huge breakthrough for Luke's emotions. God continues to move and we continue to wait for His completion in Luke's healing process.

I've been thinking a lot lately about all I have to be thankful for since Thanksgiving is this week. I'm am so blessed! God has given me such a wonderful husband who faithfully goes to work each day to provide for his family's needs, who also loves me so much and loves his children. For each of my children, when most people hear how many kids I have they usually say wow, it's good it's you and not me. I tell them I'm so blessed to have such wonderful kids and I really mean it, God has blessed me beyond my wildest expectations in my children. I'm so thankful to have such wonderful parents who faithfully pray for our family, they also deliver fresh milk to our home once a week and are always willing to lend a helping hand around the house. For my sisters, brother, sisters in law and brothers in law, though I don't get to see some of them often, I'm sure thankful that God has blessed me with such wonderful siblings. For amazing friends who encourage me in my walk with Christ. For a comfortable home, for heat and running water, which I always appreciate more after coming home from Mexico. The list could go on and on and on and on and on, you get the picture. What are you thankful for today?

Thank you faithful blog followers your prayers are wonderful to have,
Luke's Mommy Suzi

Friday, November 21, 2008

I need to find Balance in my life and stop "beating" myself up

Yesterday was a challenging day. I was doing a pretty good job of beating myself up. You see sometimes I feel that my other children, you know the ones that are not "Luke" get gypped out of so much at times. Finding a way to balance my life is so tricky and while I try so hard to lean on God and have Him guide me through each day, sometimes I don't feel like I'm doing a very good job.

You see Lily my sweet little girl was completely and totally potty trained until about few months ago, I would get upset and wonder what had happened to have her regress. Finally I took her to the Dr. yesterday after so many people told me that she might have something wrong, sure enough she has a bladder infection. None of my children or myself for that matter have ever had one of these so I didn't know the symptoms. Does that make me feel better, NO! I should of been on top of Lily's care better, I should of taken her to the Dr. a few months ago when all her "potty accident's" began. But alas I didn't in the name of "being to busy," it's so easy to get into that trap and I have found myself entangled in the too busy trap for too long.

I hope you don't read this and judge me, I promise to once again with God's help find balance in my life. Balance to schedule my life better, balance to get more sleep, balance to find time to help all my children equally with their needs, balance to make more time for my husband, balance to spend more time in prayer and bible reading, balance to not rely so much on my older daughters, balance to find time to exercise and lose all those pounds I need to lose. I know that you get the picture. Will you please pray that God will help me find that much needed balance in my life? I find myself feeling selfish just asking you all for your prayers, but I realize that your prayers have gotten me through the last 4 years of my and they are powerful, therefore I will thank you in advance for lifting me up.

Love in Christ,
One humbled Mommy, Suzi

Saturday, November 15, 2008

A week full of appointments!

Here's Luke and I at one of his many appointments this past two weeks. I don't know why I fill up our calendar with so many appointments in a week. I guess sometimes I think that if I get them all out of the way one week maybe I can have a week off, but it just doesn't seem to work that way most of the time. We were at the Gastronologist in the picture above, after waiting 1 1/2 hours we finally saw the Dr. for 5 minutes for him to tell us that he is pleased with his weight gain of 4 pounds since our last visit, that he is looking good and that he doesn't need to see Luke again for a year. It's really amazing that I have a smile on my face since I was extremely frustrated after sitting in Dr.'s offices for 3 hours that day.

I took all the kids to the dentist this past week, including myself for our bi-annual teeth cleaning day. Good news the only one to have 2 cavities was Ezekiel, it was his first ones and hopefully his last. The Dentist said that Luke's teeth look great, he had a bit of tartar but nothing more than the usual amount. I was so thankful as I know so many children like Luke that have major problems with their teeth. It was very challenging to say the least to get his teeth cleaned, I had to hold his mouth open the entire time the Dentist was working, I also had to suction him as needed. I'm so thankful for a dentist that is willing to work with him, I know many Dentists will just send kids like Luke to see a specialist.

Our week wasn't all appointments though. Here are the kids looking a book that their wonderful Auntie Cindy is reading to them. Can you tell they are all enjoying it? I'm so thankful that I'm finally getting a good schedule going with homeschooling the boys this year. We have been trying to get started by 9:00 each day, they do work at home and then also go to Auntie Cindy for 1/2 hour each of reading. One of the most wonderful things about this past week is that Natalie and I are working out everyday, it has been a goal of mine for so long and I'm finally doing it.

We went for a walk last Saturday evening at Grandpa and Grandma's "trail", they live on a great trail that goes for 15 miles long. Luke was smiling the whole way, he loves his new chair and getting out in the open air. Another nice thing about his new chair is that Lily is able to stand on the side of it when she gets tired walking.

We sure do miss Amy, but are glad that she is able to enjoy her time in Denmark. She's already been gone for almost 4 weeks, only 7 weeks to go. Natalie and I are finding a new "normal" with her gone. I've actually been cooking again and can say that I'm enjoying it. I hope all is going well with all of you out there in blogland, it would be so wonderful to hear from you, even if it's only a few words to say that you are still out there.

Be blessed our dear friends,
Luke's Mommy Sue

Friday, November 07, 2008

Is anything to hard for the LORD?

Is anything to hard for the LORD? (Genesis 18:14)

This is God’s loving challenge to you and me each day. He wants us think of the deepest, highest and worthiest desires and longings of our heart. 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 of 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 what 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

I read this tonight in my Streams in the Desert devotional and all I can say is WOW! Thank you Lord for your sweet reminder to me that nothing is too difficult for you, healing Luke is so easy and I really do believe that you will do it in your time. What about you? What have you given up on? I ask you this one last time, “Is anything to hard for the Lord?”

Love in Christ,
Luke’s Mommy Suzi

Monday, November 03, 2008

Luke is doing much better, thank you for your prayers

This morning when I got up Luke had taken a huge turn for the better, he had no fever and his oxygen numbers where great. He's had a pretty good day, except for the fact that he is a little more tense than normal. He's doing great tonight, I'm ready for a much needed good night sleep.

I found this quote the other day in my Streams in the Desert devotional book:

When all our hopes are gone,

It is best our hands keep toiling on
For strength to bear is found in duty done;
And he is best indeed who learns to make
The joy of others cure his own heartache.

Wow, all I can say is that if all of us would take our eyes off our problems and begin to look for ways to bless others, we would all be blessed.

Thought I would share some pictures with you all of this past weekend fun times, ENJOY!

Love in Christ,
Luke's Mommy Sue

Come along with me as I share what its like to spend the night by Luke's bedside. Please pray that he will get better soon.

Here I am it's about 1:45 a.m. I was getting ready to go to bed this evening when I noticed that Luke was struggling with his breathing. He is on 1 liter of oxygen, which is not a huge amount, but I'm getting ready to turn it up to 2 liters if his number don't come up soon. I'm extremely tired after a very busy day. I was up most of the night last night with Zeke, who wasn't feeling too good, then got up early this morning to cook Zeke a special Birthday breakfast of Bacon and French toast. Zeke was feeling better so we all got ready to go to church and we were only 10 minutes late, not bad for our family.

After church I put the casseroles that Natalie and I made last night into the oven to bake, then made up a Ceasar Salad for lunch, we only ended up having 22 for lunch. Zeke had a nice birthday, which I'm very thankful. It was nice to have Amy call us on Skype, even though she is in Denmark she was able to visit with us, face to face and be a part of Zeke Birthday celebration. If you don't have Skype you should check into it, it is a wonderful invention.

I am pleased to say that we finally got Luke and Lily's room put back together last night. My sweet sister Jill came over to help us sort, toss and organize their closet. Natalie went through a basket of papers that were put in the closet 4 years ago right after getting home from Luke's first Hospital stay. It was wonderful to throw away all the massive amounts of information on Trache care, machines that we no longer have and all the old paperwork and discharge papers we no longer need. I hope to put together a scrap book of all the cards and memories from that time in Luke's life to remember all the love and prayers so many poured out on our family during the darkest time in our lives.

"Opps" you'd think I'd know better, instead of just turning up his oxygen tank, I should of been checking to see if it had any oxgen left in it, silly me. After going back to his room for the 6th time in the last few minutes I finally got smart and changed his tank. I'm hoping that will help him and I will finally be on way to bed here in a few minutes. It's a little after 2:00 a.m. and I'm feeling pretty confident that I finally fixed Luke's oxygen problems, I'm off to bed for a quick sleep before all the kids get up in the morning.

I thought I was off to bed, it's 2:30 a.m. and Luke's heart rate is going up so I think he might be coming down with a fever, he sounds horrible and he's struggling to catch a breath, though he's still only needing 1 liter of oxygen. It's nights like these that I have to really depend on God to keep fear from creeping into my heart and the lies spoken into my head, "if he doesn't get better you might have to take him into the Dr. tomorrow" or "who knows if it will turn into pneumonia again and he will end up in the Hospital." I have to rely on that verse in the Bible that says "to take every thought under the obedience of Christ".

Well it's 3:00 a.m. and Luke definitely has a fever, I just checked it and it 102.3, his heart rate now is steady in the 160's, he just threw up and he is up to 2 liters of oxygen. I gave him some Ibuprofen, praying he will keep it down. Here's hoping I will be off to bed soon, but not feeling as optimistic as I was a little while ago. As long as he is alarming I know that it is useless to go to bed since I don't always hear his alarms going off at night anymore.

Now it's 3:40 a.m. and I'm sitting in Luke's room because I'm tired of getting up every few minutes to go back there. His oxygen is doing a bit better, but his heart rate is not coming down, praying that God will reach down right now and touch my precious Lukie.

It's close to 5:00 a.m. and Luke seems to finally being doing a little better. He has not alarmed in about 25 minutes and his heart rate is finally coming down to the 140's. He definitely sounds a little better, not struggling to get every breath, he is on 1/2 liter of oxygen. Praying I can finally get some much needed sleep and of course for Luke to wake up feeling better, nothing is impossible with GOD.

Love in Christ,
Luke's Mommy Suzi

PS Do you have any prayer requests?? I hope you know by now I love praying for all of you out there in blog land, it's exciting to see God answer prayers.