Saturday, February 20, 2010

Luke is about 97% better:] Gordy & I leave tonight for our cruise, with God's peace and joy, knowing God is in control!

Well the day has finally arrived, in about 8 short hours Gordy and I will be taking off to the airport to catch our plane. I'm so thankful to report that Luke is doing so much better, he is still on a wee bit of oxygen at night and I'm okay with that, though I'm hoping tonight he will be back to needing none. Isaiah is doing better also, I ended up taking him and Lily to the Dr. on Thursday and I'm so glad I did, he had a very infected ear, along with his raw nose and throat, Lily just had a cough which is gone, praise God. The antibiotics seem to be doing their job and Isaiah is making a good recovery. I'm a thankful that I can now get all the last minute details finished without the worry or wondering if I should be going.

I've gotten so much accomplished this week, not sure why I think I need to get so many extra things done before I go on vacation, but I'm sure I'll be glad when I get home that I did. The one thing that I did not get done was putting up our Valentine's Day card and letter for all y'all to see. I might still do that even though I know it will be so very late. It's the thought that counts, I hope!

We sure would appreciate y'all holding up our children in prayer while we are gone. On the one hand it is so hard to leave them, but on the other hand I know that Gordy and I need this break from the constant stresses that we live under. Just thinking about a full week of uninterrupted sleep is the most exciting part of this cruise:] Along with all the other exciting stuff we will be doing!

Wish I had time to post some pictures, I will make it a priority when I get home. Sure do appreciate all your prayers, thank you in advance:}

Love ya,
Luke's Mommy Suzi

Wednesday, February 17, 2010

Luke's definitely has his voice back and his beautiful smiles:}

Luke is feeling so much better, he's definitely not at 100% yet, but he has his voice back again and his smiles. His Pediatrician told me yesterday that he doesn't think Luke has pneumonia, but he definitely has a collapsed lung, I can't remember the medical name of it. The best way for Luke to get better is to cough him often and get the air moving in his lungs as often as we can. We are going to continue the two antibiotics that he is on until they are done. Luke is blessed to have a Dr. that will listen to me and know that I know just exactly when he needs to be seen and when he doesn't, it sure does save some trips into the Dr.'s office.

Last night was so much better, no alarms until early this morning. I went to bed early I was extremely exhausted and couldn't stay awake another second. I have so much to do to get ready to leave on Saturday. I'm praying that God will heal all my children, Isaiah is not feeling so well today, his allergies are acting up and Lily still has a bit of a cough, the only way that I will be confident about going on the cruise is if I can leave a house full of healthy children.

My list of THINGS TO DO, is extremely long maybe if I don't take time to sleep for the rest of the week I might be able to get them all done before Saturday night when we are supposed to leave. Mind you I'm trying not to complain, but it's just overwhelming!

Love in Christ,
Luke's Mommy Suzi

PS If you came looking for our Valentine's Day Family Newsletter, I am still working on it and hope it will be posted within a day or two, thank you for your patience.

Monday, February 15, 2010

This was a very hard day, full of lots of disappointments and stress, not the "Too Much Fun Day" that I had planned:[

This was one of those days that I hope never have to relive again as long as I live. Don't get me wrong I'm so happy that we are home and not in the hospital tonight, but even with the joy of being at home it was still a very rough and stressful day. After I helped get the kids ready and their snack packed for the day, Gordy left with them to have their "Too much Fun Day." I then got ready to take Luke into Urgent Care. He was having such a rough morning and I knew that we needed to get there ASAP. When I arrived at Urgent Care I realized that Luke's wheelchair stroller was not in the back of the van. There was no way that I could take him in without help so I turned the van around and went back home for his chair. When I left I didn't know that the van was almost empty so I had to stop for gas on the way home, so that I wouldn't run out on our way back to Urgent Care. Not a pleasant way to start a very long day at the Urgent Care.

When we finally were seen by the admitting nurse I could tell she was very concerned for Luke, as was I by that time. When she hooked him up and his oxygen numbers where in the 80's and stayed there even after I turned up his oxygen to 3 liters. When she looked at his fingernails they were a beautiful blue color, not the color you want to see on any person. Needless to say she got Luke back to a room ASAP. We had two nurses immediately in there very concerned about Luke's oxygen deprivation, they hooked him up to their oxygen and turned it up to 5 liters, I knew that Luke would not do well with it being turned up that high, it just blows too hard into his nose to really do him any good. When the Dr. came in a few minutes later I told him that Luke would probably do better if we turned it down a bit and he agreed to try, it did help him a little bit.

After the Dr. listened to Luke's lungs he decided that Luke should go up for a x-ray to be sure he didn't have pneumonia. We waited another hour for the radiologist to call him back, because it was a holiday there was only one person working today. After his x-ray we got back down to his room and once again Luke's oxygen numbers were plummeting way to low and his heart rate was soaring. The Dr. came in shortly with the news that Luke had pneumonia in his lower right lung and his lower left lung had collapsed, not the news I was looking for. He took another look at Luke and thought that Luke should probably go over to the Hospital, I asked him if we could try a mask on Luke for awhile first to see if that would help his oxygen numbers and praise God after putting on the mask and getting some prayers going he began to make a good turn around. They gave him two very painful shots of antibiotics and a prescription for one more antibiotic to take home and told me to call Luke's pediatrician in the morning with an update on how Luke is doing for further instructions of what to do next.

What a difference 24 hours make! Last night at this time I was so stressed out knowing that Luke would need to go into to Urgent Care, tonight Luke is doing soooo much better, he is on blow by and his heart rate is almost back to normal. My prayer right now is that I will wake up to a healthy boy, that is what in faith I'm believing is going to happen, in Jesus Precious Name, Amen.

Now I'm exhausted staying up way to late trying to get caught up on some necessary tasks that just won't wait another day. I got my laundry finished and folded, now all I need to do is get it put away tomorrow. Amy helped me get the birthday presents wrapped, as mentioned in my last post, Natalie turned 21 today, her birthday party is tomorrow night. My dad turns 80 on Wednesday and we are celebrating Gordy's 50th on Friday night. Lots of details still need to be done for those parties and I am working on getting them all accomplished:]

I keep believing that Luke is going to be back to 100% by Saturday, that's the day we are supposed to be leaving for our cruise. Trusting in God is so very hard some days, but I know that the reward if I can truly do it will be so wonderful!

Love in Christ,
Luke's Mommy Suzi

HUGE change of plans for me today, instead of taking Luke with the kids on a too much fun day, I will be taking him into Urgent Care, BUMMER!

Yesterday Luke began to get sicker and sicker until last night became one of his marathon horrible nights. I was up until 4 something suctioning him and responding to alarms. At one time his fever was up to 104, his heart rate up in the 180's and he was up to 2 liters of oxygen for awhile.

I was so hoping and praying that we could bypass the Luke major sickness ride before our trip this time. It seems to be that every single time I've planned on going out of town Luke has gotten extremely sick and this time seems to be no different. It's only 5 more days until Gordy and I are supposed to leave.

PLEASE, PLEASE, PLEASE pray with us that the Lord reaches down and touches Luke one more time, TODAY. I know that God is able to do this for us and I'm trusting in Him to once again reach out with His Healing Hand and take away this horrible sinus infection for good. In my mind I wonder why God continues to test me in this area of trusting Him with Luke and not doubt He is able to keep him healthy and whole while going away from him. I guess I have not passed this time of testing yet, I hope and pray that this time I will "get it" and it will be the last time that we will have to go down this path. I'm thankful the Lord that has brought so many of you by our sides to hold up our arms of faith when we become too weak to hold them up by ourselves. THANK YOU!!

Love in Christ,
Luke's Mommy Suzi

Friday, February 12, 2010

We are happy to report Luke does not have pneumonia, only a nasty sinus infection and we are praying that will go away today!

I did take Luke in yesterday to his Pediatrician and after listening to his lungs, the Dr. assured me that Luke did not have pneumonia PRAISE GOD! But he did say that the lymph nodes on the back of Luke throat look enlarged and from the sound of his symptoms he thought that Luke has a sinus infection. Which make perfect sense to me since all the gunk is settling in the back of his throat causing him to need to be suctioned constantly to keep it clear. He prescribed some Amoxicillin to help clear up the infection, normally I wouldn't be a proponent of putting Luke on a antibiotic, but we really need to get him completely healthy before next weekend. He seems to be doing a little better this morning, we are believing for a complete and total healing today:}

Amy is feeling so much better, thank you for your prayers. But now it seems like the evil cough has attacked Lily, she was woke up numerous times last night coughing like crazy, now I'm wondering if I should take her into the Dr. today or wait a few days to see if it continues. More questions, I'm praying for more wisdom and answers from Jesus today. It's so comforting that the Lord's wisdom is so abundant and free to receive.

We are getting ready for a BIG weekend, for that matter a very busy week full of Birthday's and fun. My Dad is turning 80 next week and for his Birthday party he wanted to have a BUNCO party, so tomorrow at 5:00 at our church we are planning a fun party to celebrate 80 wonderful years. If you would like to come you are definitely welcome he wants everyone that knows him to come. Let me know if you need instructions. Then of course Sunday is Valentines day, Monday is Natalie 21st Birthday we are planning a too much fun day that day and celebrating her birthday the next evening. Then we are planning a small family party for Gordy's 50th Birthday on Friday night. We leave for the cruise Saturday night, oh my goodness I really don't know how much sleep I will get next week, but that is okay because I will be getting caught up on the cruise:}

Love in Christ,
Luke's Mommy Suzi

Thursday, February 11, 2010

The mystery of Luke continues to baffle me, we are off to the Dr. for some answers

I decided to call to make an Dr. appointment for Luke, I take him in at 2:00. The mystery of Luke continues to baffle me, I know he is not feeling well and sounds terrible, but his oxygen levels and heart rate continue to be okay so I'm not sure what is going on. Hopeful for answers today.

Thanks for the continued prayers, they are appreciated!

Love in Christ,
Luke's Mommy Suzi

Wednesday, February 10, 2010

To contact the Dr. or not, that is the question of the day?

As I mentioned in my last post Luke has been battling something for a few days now. I'm debating today whether I should contact his Pediatrician. He has been coughing out yellow gunk for a few days now and been kind of lethargic, but has not been battling a high fever or high heart rate. He has been on oxygen at night and has desatted a few times, way to low for my liking. I will never, ever get used to seeing my son's oxygen number drop down into the 60's, even if it is just for a few seconds.

What would you do if you were me??? Would you contact the Dr.? Give Luke another day to see how he does? There are days that decisions regarding Luke's health are so complicated and hard. I know that Luke needs prayer and know that God could reach down His Healing Hand right now and touch Him, that is what I'm hoping and believing for today. Would you join with me in prayer for God to touch Luke and Amy who is also battling with a horrible cough today?

Love in Christ,
Luke's Mommy Suzi

Tuesday, February 09, 2010

We are blessed! Your comments and prayers brought great joy and hope to my heart, thank you:]

Once again I'm humbled and so thankful for the outpouring of love, support and prayers you have so willingly poured out upon our family. Thank you so much for all the wonderful comments, they are like salve to my wounded heart.

Luke has been fighting off some congestion the last few days, I'm just praying that he doesn't get any sicker. Have I told you lately about how much Luke is smiling lately? We can just call him smiley Joe. He is always so attentive to any all and all attention he gets, he loves it when people stop and take time to talk to him and touch him. It is so wonderful to see him so happy:}

We had to say goodbye to Luke's OT Eric, we will miss him and the wonderful care he had taken with Luke. It was so hard for me to see him leave Luke's life, he was one of the few people that work with Luke that really knew that Luke is "in there," he is also a strong Christian and believes in the power of prayer. Until you work with the medical community that gives you little hope of any kind of recovery of your child you will never in a million years know how wonderful it is to have at least one person who knows that God is able to heal and bring about a miracle in your child's life. I would like to pray God's richest blessings upon Eric's life as he continues to bless those children that benefit from his kindness and amazing God given talents.

I was filled with mixed emotions as I heard from Luke's rehab Dr. that both he and the orthopedic surgeon do not feel like Luke is a good candidate for the muscle release surgery that we thought we would have done on him to help him get his legs bending again. They would like Luke to do one more Baclafen pump trial first to see if we can get more relaxing of the legs with a higher dosage of Baclafen, being inserted into his spinal column. There are times that I know the Dr.'s have given up on Luke and any hope that he will ever need or use his legs again. Then I'm reminded that they don't know about the miracle working Father that I love and trust with Luke's healing, they only know what they see with their eyes. Faith is believing what we can not see and that is where I choose to put all my hope!

We did have a Realtor come over to take a walk through our home to do an assessment. To be honest I was a bit discouraged when he left. We had really done so much to get things ready to sale our home, but after his walk through I realized that we have so much more to do. IT IS OVERWHELMING, to say the least. Then to realize that with the housing market so depressed right now our home is worth way less than we had hoped for. My one and only comfort is knowing without a shadow of a doubt that God will sale our home when His perfect timing has come, that He has a perfect place for us to live and to know that He is directing our steps gives me peace to know that He will make a way where there seems to be no way.

Only 11 more days until we leave for our cruise, excitement is building! Along with the hope and prayers that Luke will stay healthy, having him so "junky" this week is not good for my emotions. I know I have to keep my eyes on the God and not my circumstances for that is truly what Faith is all about.

Love in Christ,
Luke's Mommy Suzi

Tuesday, February 02, 2010

Warning: This post is very long, that's what happens when I wait too long to update it. I hope you will find it to be worth your time.

I'm finally going to sit down and bring Luke's blog up to date. Not sure if anyone really follows it anymore, but since this is our journal of Luke's journey, I thought I'd better get it updated. Luke is doing good lately full of lots of smiles and has been healthy, how wonderful it is to write those words:}

In the last post I mentioned that Luke was getting casted for new hand orthodics. That appointment went great and I could tell the two OT's that were working with him were impressed with his range of motion. The casts look great they were both straight, which is amazing for Luke. Luke's OT Eric is being transferred to a different center and we are praying whether we should follow him there as he has been so wonderful working with Luke. I was so excited about our appointment with Matt the Rolfer, he was sure that the Botox had helped Luke and said that his muscles and deep tissue was feeling better than he had ever felt it before.

We also had a follow up with his rehab Dr. after his botox, it was agreed by all that work with Luke that the shots did some good for Luke. We were told that day that his Dr. would talk with the Orthopedic Dr. about surgery to release some of Luke's muscles to help his legs bend, that was two weeks ago and I still have not heard back yet. I'm thinking I need to call to find out what is happening. We are increasing Luke's Baclafen doses to see if that has any effect on his muscle tone issues. There are times that he seem so to be so much more limber and then there are other times that he is still as tight as he could possibly be, it is extremely challenging to know just exactly what will help Luke, it is also comforting to know that God knows.

I've been holding on tight to my promise from God that Luke is going to be healed, but to be honest my fingers have tried to slip a few times lately. I almost gave up hope, which is a terrible place to be, last year was so hard, it seemed at times that Luke would be better off in heaven with Jesus. Have you ever asked yourself how long, oh how long God?? Where is God, why hasn't He heard my cries?? It's been 5 1/2 very long years since Luke's accident, he will be 7 years old next month, that just doesn't seem possible. I found myself asking those questions a lot lately, realizing that when people talked about a Healing God, I would doubt that was true, not a good place to be. As usual I am being totally honest and open with those that might still be following this journey. Gordy recently told someone that Sue has never wavered in her faith that God is going to completely heal Luke and I had to tell him that is not true anymore. There were many times over the past few months that I have wavered, just shows you how human I really am. God's timing is perfect and I have to continue to rest in knowing that God's ways are definitely not always my ways and his timing is not my timing. God is faithful and my faith has been restored, I am once again believing with my whole heart that Luke will be completely healed here on earth, that he will walk and talk again, for I know that NOTHING, absolutely NOTHING is impossible with God.

We have been getting our home ready to put on the market, I realize that this is not a good time to try to sale a home, but with Luke getting bigger and harder to carry around, we have to find somewhere to move where it will be easier to care for his needs. For the last month we have been working like crazy, decluttering rooms, painting, doing a deep cleaning in the garage, putting in new flooring in our bathroom and the list goes on. . . . This Friday we will be walking a Realtor around our home to do an assessment, I'm praying that we will get what we are thinking our home is worth, but with the market so bad right now we just aren't sure of what we will hear. I am confident if it is God's will for us to move that He will sale our home and help us to find the perfect home to move into.

Guess who is taking her husband on a cruise to celebrate his 50th Birthday?? If you guessed me that would be right. Gordy and I are looking forward to and counting the days until we take off on our Mexican Rivera cruise at the end of the month. We are looking forward to just having some rest and relaxation, with a little bit of fun thrown in there. A whole week of no alarms going off at night, no jumping out of bed in the morning to Luke coughing, no waking up to kids wanting to ask you a question, no laundry, no dishes to wash, no cooking, no working, no stresses with medical bills or appointments or medications to give, no . . . . Don't get me wrong I love, absolutely love my children, anyone who knows me knows this to be true, but I honestly believe that best thing that Gordy and I can do for our children is to keep our marriage strong and we need this time to be together, just the two of us. We are blessed to have Amy, along with Natalie and Joshua who will be staying at our home during that week to watch the kids. Will you pray with us that Luke, for that matter all the children will stay healthy before, during and after our cruise? That would make it so much more enjoyable for us.

Well I've done it again, I've made this post way to long, sorry:/ If you are still reading this you a true friend. A little comment to let us know you are still out there would be great.

Love in Christ,
Luke's Mommy Suzi