The Good, The Bad and The Ugly News from Luke's last Doctor Appointments

Here are some pictures of the beautiful mural
wall at the Mary Bridge Out Patient Clinic

As mentioned in the previous blog Luke had two Dr. appointments on Friday. The first one was with his rehab Dr. we were discussing Luke's muscle relaxant, baclafen. We had tried to increase the dose but found that when we did Luke began to have more of his startle seizures, in fact they got so bad that he would do them without even being touched. The Dr. agreed that this wasn't good, therefore we are keeping him at the dose he's been for the past year. The Dr. did say that Luke was looking good and even thought that he looked like he had gained some weight, of which I had to tell him that this is not so, he actually lost a pound, but nevertheless it was good to hear a Dr. saying that Luke looks good. Losing a pound doesn't sound like a big deal unless you are way underweight and then it's a huge deal. We also discussed putting Luke into some casts to help get his ankles so that his feet are bending up towards his legs, he thought that might help his knees too, so we will be making that appointment after our trip.

After going to that appointment we headed over to the lab to do his bi-yearly full comprehensive metabolic bloodwork. Getting blood out of Luke is like trying to extract liquid from potato, I'm sure potatoes have some kind of liquid in them but getting it out through a microscopic tube would be just about impossible. I could tell the technician was having a huge challenge, but in the end she got just enough for the test.

We then took a bit of a walk around a beautiful park by the hospital, what a blessing to be able to take Luke on walks again now that the weather is getting nicer.

Our next appointment was with his pediatrician, we needed to see him about getting some prescriptions for a portable oxygen concentrator and oxygen while we are on our trip, we also wanted to discuss his bloodwork results. I was so disappointed to find out that Luke's Co2 numbers are still too high, in fact they are the highest they ever been on this test. PLEASE, PLEASE pray that Luke will start to take deeper breaths so that he can blow out that damaging Carbon dioxide from his body.

Luke and Lily stayed the night at Yoli and Juan's that night, they are so sweet to give us a break every once in awhile. They had a bit of a challenge when Luke was not doing so well, he was breathing really hard, needing to be suctioned constantly and his heart rate was soaring. I had forgotten to send Luke's Sudafed with him, so I took it over to him and after giving him the med and some prayers he settled down. I offered to take him home of course, but they said no they would keep him. What a HUGE blessing it was to get a full 9 hours of uninterrupted sleep.

We have less than a week before we leave on our vacation, while I'm so excited about going, I'm also very aware that I'm going to be going non stop to get everything pulled together this week, oh well it is what it is: -)

Love in Christ,

Luke's Mommy Sue

To Go or Not To Go, that's the question?? Being confident that God has our answer:-)

Gordy and I have been trying to decide whether we should take our vacation this year. You see Gordy celebrated his 20 year anniversary of working at REI last year and was awarded a 5 week sabbatical to take during that year, but since Luke was having so many challenges last year REI let us delay it to this year. We originally hoped and planned to take a trip across America, fulfilling our lifelong dream of going to Washington DC. But after Luke's last stay in the Hospital we realized that he is too "fragile" to go across the USA, so after much prayer and discussion we gave that dream up once again.

We have decided to go California instead, it will be warm there and only a 24 hour drive home if we need to get back quickly for an emergency medical need for Luke. We did something similar to this trip 5 years ago when Gordy had his last sabbatical. Our church is taking a missions team down to minister in Mexico at the end of June and we thought that Gordy, Isaiah and Amy could join up with the team in San Diego to go with them. I would stay in San Diego at a KOA campground with Luke, Lily and Ezekiel, Nicole Jacobs a very good friend of Amy's will stay there with me to help out with the kids. Amy will come home with the team after Mexico to prepare for her 3 weeks at our church camp, we will miss her but know that she needs to fulfill her commitments to the camp.

So God willing this is the plan: We leave on June 11th right after I walk the 12K Sound of Narrows in Tacoma, hoping to get out of town around noon. We stay that night in Yreka, CA, which will be about a 7 hour drive. The next day we get up early to go to church at Bethel in Redding, we will stay in Redding 3 nights, so that we can do some exploring around that area. We leave there on Wednesday to head down to a campground which is about an hour from Yosemite National Park, we will spend 4 nights there, then on Sunday we go to Anaheim. We plan to go to Disneyland all day Monday, we hope and pray it won't be too warm of a day so that Luke can join us at Disneyland. On Tuesday we go to San Diego, we stay there 9 nights while the missions team goes into Mexico. Once we leave San Diego we will take a day to get up to Eureka, CA which is on the coast, we spend the 4th of July there, doing lots of exploring at the Red Wood National Forest. We will then end our trip at one of our favorite campgrounds Whaler's Rest in Newport, OR.

We plan to get home on Thursday July 13th in time for two weddings that weekend. Then Gordy and I will take off a few nights the next week to celebrate our 28th wedding anniversary, I'm sure we will both need a couple of days of rest after our vacation:-)

I'm sure some of you out there are sitting there thinking: Are you crazy?, wow, how lucky wish we could go, have you really thought about all the medical supplies and equipment you are going to need?, it's dangerous to go into Mexico right now, what if Luke get's really sick?, do you think Luke will tolerate that long of a drive in the van?, can you really afford to take a trip like that? Or perhaps these are just the questions that are going around in our heads. We will need to take lots of extra oxygen and I'm looking into getting a portable concentrator to take, we will have to be sure to take extra of all medical supplies, we have prayed about the team going into Mexico and feel a peace from God that He will protect our team, we have planned to take this trip for years now, saving money for it so we feel that we are able to afford it.

And yet we still have reservations about going, especially after the last few nights we've had with Luke, he's needing more oxygen lately at night and even some during the day time. We were hoping that we could get our faithful prayer warriors to join with us praying that God will give us a true peace about going, that God will keep Luke healthy the whole time we are gone, that God will keep the team safe in Mexico and me to be fine with the kids in San Diego while they are gone, that Luke will do fine on the long drive down there, that it won't be too hot the day we go to Disneyland so that Luke will be able to tolerate being outside the entire day, that this could be a fun time for our family, a time of no stress, with lots of laughter and joy. Would you be willing to pray faithfully for our family while we are gone??

I take Luke into two Dr. appointments today, first to his rehab Dr. to discuss his muscle relaxing medications and then to his Pediatrician to talk about getting prescriptions for exchanging his oxygen tanks while we are gone and for getting a portable oxygen concentrator. Luke will also have some blood work done, please be praying for good results.

Love in Christ,
Luke's Mommy Sue

Luke was finally approved to get the "Vest Machine" and it has been making a huge difference in his life, PRAISE GOD!

Sorry it's taken me so long to update Luke's blog, some days, no I mean weeks, no I guess I really mean months are so very busy. Even now I really should be in bed, but I knew that I couldn't go another day without sharing at least a few words with y'all. I actually sat down a few weeks ago and posted a blog post and then for some reason the computer lost it, can you say frustrating??? It was actually the night before Daniel, Sarah, Natalie and I walked a 5 K to raise funds and awareness for stopping human trafficking. The picture below is right after we finished the walk. It was the day before Mother's Day so after the walk Daniel and Sarah took Natalie and I out to there favorite little Thai restuarant in Seattle, they treated me to a wonderful lunch. We then ended the day playing a game of Settlers of Catan, it was a great day: -)I've been wanting a picture of all the kids lying in a circle for a long time and on Mother's day I talked the kids into laying on the ground for me to take one. I'm such a blessed Mama!
After sharing a wonderful lunch with my parent's, the Rodriguez family, a good family friend Mary and her daughter Rachel, plus a few others, we went on a walk to the Chamber's Creek Park. Even though it was a cloudy day, we all enjoyed ourselves at the park. The kids had blast looking for crabs under the rocks, some of them even got brave enough to pick some of them up.



Luke has been doing so good, Praise God. Our insurance company finally okayed him getting the vest machine. He was quite "junky" the first few days after getting it, but he is now doing so much better during the day and his nights have been amazingly better. We have been okayed for the vest for a month at which time they will re-evaluate Luke's progress to decide whether they will let us keep it. I have to believe that when they hear about how great Luke is doing they will decide to let us keep it here. Even though our insurance company will be paying their part it will still cost us about $150 a month, they are renting it to own it eventually. Luke loves the machine everytime we put it on him he get's such a nice smile, he even makes noises with it sometimes.

I did say I've been busy right?? One of the many things that I did was finally get Luke and the other kids into the dentist. I'm so thankful to say that Luke's teeth look great along with no cavaties for the kids. I can add Dental Hygenist assistant to my list of many different jobs that do on a daily basis, I was there to help keep Luke's mouth open and suction as needed. It was a bit stressful to be honest, but not as stressful as it was for Luke.Oh well, so much for keeping this post short, I guess it's just not possible for me to do that and even though I have so much more to share with you, I'm going to log off and go to bed. Once again I have a very full day tomorrow.

Love in Christ,
Luke's Mommy Sue

Here's a video of Luke hooked up to the Vest Vibration Machine. It's hard to believe a little machine like this can cost $16,000, yes I really did mean to say sixteen thousand dollars. It's going to take us a few years to get it paid off that is of course if our insurance company decides to let us keep it, please pray they let us keep it.

The Good News vs. The Not So Good News

The Good News: I took Luke into his Pediatrician today and found out that his lungs actually sound good. Wow, I wasn't expecting to hear that, oh me of little faith.
The Not So Good News: Looks like Luke has his first official ear infection, along with some allergies going on right now. Which we think are the reason for all the congestion he is having, therefore making his O2 numbers low, along with the constant suctioning we've been doing for the past week.

The Good News: The lab techinician was able to get a good vein on her first try, she took 3 vials of precious blood.
The Not So Good News: I'm anxiously waiting to hear the results, wondering how his CO2 numbers will be along with his other numbers, hoping to be surprised.

The Good News: The Dr. took a look at Isaiah's arms today and prescribed a new kind of antibiotic cream, along with saying that it's good we have an appointment with specialist in a few weeks. What a blessing to have our great Dr. take a few minutes to look at Isaiah's arms, even though it wasn't his appointment.
The Not So Good News: Isaiah's arms still look horrible, he just can't seem to leave them alone, therefore they are not healing, please pray for them heal once and for all.

The Good News: I was able to get two nights of uniterrupted sleep last weekend when I went to visit my sister Lori and her husband Lonnie. I went over on my birthday, last Saturday and came home on Monday evening. It was so good to see them and enjoy the sunshine.
The Not So Good News: It was the only full two nights of sleep I've had all week long, last night being another nightmare night. I ended up sleeping on Luke and Lily bedroom floor as I just didn't have the energy to get up to go to my bed since I was having to suction him about every 15 minutes to keep his heartrate down and his o2 numbers up.

The Good News: I had a wonderful birthday! Our family went out to dinner at the Spaghetti Factory and then came back home for cake. I was blessed with some new shoes and some other great gifts.
The Not So Good News: After having such a great evening with family, I spent the rest of the night suctioning Luke, only got a few hours of sleep, thankfully my family let me sleep in.

The Good News: I lost another pound, down 26 pounds, half way to my goal.
The Not So Good News: Luke still weighs 47 pounds, he's been holding steady there for a long time. He's having a hard time gaining weight because he's been expending so much energy breathing lately.

The Good News: We applied and recieved financial aid from our local Hospital, which includes all of Luke's specialists and therapists. We will now actually get 55% off any amount that we have to pay out of pocket, which includes our co-pays, woohoo!
The Not So Good News: In order to have our bills reduced I have to call them everytime we get a new bill so that they will take off the amount, therefore I have spent many hours on the phone getting all Luke's medical bills taken care of, another draining task to fill my day.

The Good News: Amy and her very good friend Nicole took off to the Oregon coast to spend a few days on vacation, I hope and pray they have a great time and stay warm.
The Not So Good News: Amy will not be here to help the next few days, so if Luke has another bad night, which I'm praying he doesn't I won't have her here to help out in the mornings.

The Good News: I'm thankful that even though I'm absolutely exhausted beyond comprehension, God's never ending supply of strength is right there to help me get through this challenging time.
The Not So Good News: Sometimes because I am so exhausted I find myself in tears often, doubting whether God cares or even hears my pleas for help.

The Good News: I am so blessed to have such a wonderful family, great friends and all you out there in blogland that faithfully pray for Luke and our family, THANK YOU! We sure do apreciate your faithfulness.

Love in Christ,
Luke's Mommy Sue

Fear often brings you to forget those things that you know are true, I'm trying so hard to not let fear overtake me these days

I hope you all had a very blessed Easter, we sure did: -) As you can see from our annual Easter kid picture Daniel and Sarah were not with us this year, they spent the day with Sarah's family. We missed them but understand that's part of married life, splitting time between two different families. Luke had a good day until the evening and then things turned rather quickly to being a horrible night. We're not sure if he was allergic to one of the animals that he came in contact with that day, first of all bunnies at church, then a dog and cat at my sister's home where we went for Easter dinner. He was so "junky", we had to constantly suction him. But we know it's not an infection we are dealing with as his secretions do not have any color to them and he is not running a fever.
It would be so easy to give into fear at this time in my life. In fact I've been dealing with a lot of fear since I had that phone call from Luke's pulmonologist on Friday afternoon. My eyes seem to be watering constantly, for someone that really doesn't like to cry it seems that's all I've been doing the last few days and nights. I know that fear does not come from God and I've been praying like crazy for God to take it away. I was blessed to go to a church meeting tonight and the evangelist that was speaking was speaking right to my heart, this was about the first thing he said, "fear often brings you to forget those things that you know are true." That is exactly what fear has been doing to me the last few days, it has made me forget that nothing is impossible with God, that is so easy to say but not easy to live out when you live with child like Luke. Another thing he said was that "delays are not denials," thank you God for reminding me once again that your timing is perfect.

I know that many of you out there think I'm crazy to continue to hope for a miracle healing for Luke, you think that I'm living in denial to except what has been dealt to our family. I've spent quite a bit of time in prayer the last few days and once again I have completely surrendered Luke into God's hands, I know that God loves him so much more than I could even begin to imagine, because He loves with a love that is so amazingly HUGE and wonderful, a love that would give His one and only son to die for our sins. His sacrifice was so awesome and wonderful, something only God could do, therefore I know that Luke is loved more than my mind can comprehend. I realize that I can trust God with Luke's life, even if that means he wants to take him home to heaven.
Once again I'm going to be bluntly honest with y'all, I have often wondered if Luke would be better off in Heaven. You see I know that heaven is so amazing and I've read a few great books about some people that have gone to heaven for a short period of time and had to come back down to earth once again. All of them without exception were not happy about coming back to earth, they loved it in heaven, the peace and joy they felt there was uncomprehensible to our human brains. I know that if Luke were to go to heaven tonight he would be whole once again, he would be able to run, shout and sing praises to Jesus, he would not be lonely because he has 3 siblings that I miscarried there that would join him, along with my sister Jenny who also drowned when she was 17 months old, along with Grandpa's and Grandma's that have gone on to glory. That said, the thought of him dying and going to heaven causes me so much sadness and grief I get really selfish and know I'm not ready for him to go yet.

Some of you may be saying Sue get a grip, it's not like he's on his death bed and you would be right, he's not but he is so fragile right now another pneumonia could easily put him there so quickly as his Dr. reminded me last Friday afternoon. Here's a little more honesty for you I also know that life without Luke would leave a gapping whole in my heart, but it would also take off a huge burden in my life. Does that sound selfish? Because it feels selfish saying that out loud. For those of you that don't deal with what we deal with on a yearly, monthly, weekly, daily, hourly, minute by minute, second by second, day after day can't even begin to imagine what it's like to have a child who can do nothing, absolutely nothing for himself. He is unable to move, talk, walk, go to the bathroom, take his own bath, feed himself, then you add on top of that the monitor that he is on each and every night that alarms off and on, on top of all the appointments, on top of the fact that we have to make his formula, which is a huge process, on top of the fact that we have major medical bills to deal with, on top of the fact that only a handful of people are able to watch him, on top of the fact that he almost weighs 50 pounds, which is so hard on our backs, you get the picture.
I just want to be perfectly clear when I say that I'm so thankful that we have Luke here today. He blesses me in ways that most can not understand, he is so cuddly, I love his precious smile, I love the way he yells when he needs something, he has brought me to a place in my walk with Christ that I can't even begin to explain. He has given me a new appreciation for things that most mom's take for granted, like dirty muddy clothes to wash, clothes that wear out from use, constant questions, dirty dishes to wash, floors to mop after spills, toys to pick up off the floor, being asked for specific toys at Christmas or on their birthdays, I think you get the picture.

Once again please understand Luke is not on his death bed tonight, though he is struggling tonight with his secretions, causing me to sit here and write this out in the middle of the night, or perhaps I should say early in the morning, as it is currently 4:15 am. I'm exhausted and as soon as I sign off I'm going to go to bed and let Gordy know it's his turn to listen to the alarms for the rest of the night. God is my strength, He is the only reason that I can go on day after day, He is the only reason that I'm able to find any kind of peace on this journey. I can't imagine how difficult my life would be without God right by my side, I'm so blessed to have such a wonderful Father, who carries me when I don't think I can go on another day. I feel like a broken record, but once again I'm asking for your prayers, prayers for Luke' s lungs to heal, prayers for Luke to start talking again, prayers for him to begin to walk again, prayers for strength to get through another day, prayer for the tears to stop flowing constantly, prayers for wisdom in knowing what to do about the trache issue, prayers for sleep and peace, prayers to have our hope renewed, prayers for . . . Thank you and may God richly bless you today.

Love in Christ,
Luke's Mommy Sue

PS I wanted to say thank you for your prayers for my Uncle David, he is recovering nicely from his open heart surgery. I took my parents up to see him on Saturday evening and it was so good see his smile and hear his laugh once again. Please continue to pray for him as he has a long journey ahead of him to recover from his massive surgery.

Bad news, Luke's lungs are not good, Good news, Christ died on the cross for my sins and took the stripes upon His back so that we can be healed!

Here is one of the many pictures I took when we went to see the tulip fields, they were gorgeous!

It's a beautiful day and I'm so thankful for so many things, Luke is healthy, we are getting the lawn mowed, I'm getting the laundry done, the kids are coloring Easter eggs for tomorrow, I lost another pound, down 24 pounds and still going strong, I'm going to go for a walk in a little bit to enjoy the warm sunshine, I think you get the picture: -)

I had to bundle Luke up during our walk yesterday, even though the sun was shining it was still cold and windy outside.

Yesterday was beautiful to, but not so fun. It started out early with making Luke's formula once again, I'm so thankful for Amy, Natalie, Lance, Jamison, Isaiah, Ezekiel and Lily for their help we got done in record time, woohoo! After that I went to get my nails done, they were looking pretty bad. Came home picked up Luke, Lily and Zeke to go for a walk around Lake Waughop. Gordy, Isaiah and Amy went to a Mexico Missions trip meeting, they are going down there in June. After taking the kids to the park we splurged and went to eat at McDonalds and I let the kids play on the toys for awhile, I got home put Luke to bed, gave Lily a bath, got the boys in bed and then I took off to the store to get a few things for Easter. There's my day in a nutshell.
While I was walking around the lake with the kids I got a call from Luke's pulmonologist with some bad news. He informed me that the Luke's chest CT showed that Luke does indeed have bronchiectasis, especially in his lower left lobe. It's so bad right now that it looks like it has pus and infection in there, which made me confused as to why Luke is doing so good right now, seems to me and the doc that he should be running constant fevers and being sick with the way his lungs look. He told me that he still thinks that the best thing for Luke will be to get a trache again, that eventually if he has lots of problems and pneumonia's they might want to look at taking out part of his lung, but they would definitely not do that unless Luke is trached. I was devastated to hear this news, but thankfully I've once again decided to turn it completely over to God. We do not have another appointment with this doctor until the end of July, I'm praying that over the next few months Luke will stay healthy and when we do go back in for that appt. we will be able to put off what would seem be inevitable trache procedure. He told me that Luke could die if he got another pneumonia, I think we already knew this to be true since we almost lost him when he had his last bad pneumonia in February.

The kids can not pass up on the opportunity to climb up on a stump and get their picture taken.

Gordy and I talked about it last night and we've both come to the conclusion that Luke could die whether he get's a trache or not, it's always a possibility and has always been one. We've known for years that he is so fragile, that has not changed. Please join us in praying that God will reach down and completely heal his lungs and restore them back to perfection, I know this would be so easy for God to do, for he is the One who originally formed his lungs when he was in the womb.

Here I am in front of one of the many tulip fields

I hope and pray that y'all have a wonderful Easter day, celebrating Jesus resurrection from the grave. What joy and great peace it brings to my life knowing that Jesus willingly died on the cross for me to be saved, He took painful stripes upon his back for us to be healed, He healed the sick and brought hope to the hopeless. PRAISE GOD, I'm thankful for the fact that when He went to heaven, He left the Holy Spirit to bring us power and comfort, without that I don't know where I would be today.

Love in Christ,
Luke's Mommy Sue

You can tell by our smiles we had a great day, can you tell we are related?

Luke broke a record today, WOOHOO!

Luke was in and out of the Hospital for his chest CT scan in record time. He did great no moving at all, therefore he did not need to be sedated, which was a huge answer to prayer. We will not find out the results for a few days, I'm really hoping and believing in faith that we are going to get good news.

Now I'm off to take a much needed nap, after only getting a few hours of sleep last night I'm exhausted and that's putting it mildly. Then I need to run errands today, off to Costco and Fred Meyer to go grocery shopping and to get the rest of the ingredients to make Luke's formula this week. Never a dull moment: -)

Love in Christ,

Luke's Mommy Sue

Here's a recent picture of Luke and Isaiah in the HBOT chamber. What a blessing to have these free dives, that were donated from the HUGS Foundation. It's been so nice to be able to have Isaiah go in with Luke, not only has it benefitted Isaiah, but it's nice to have someone in there with Luke when he coughs or needs his mouth wiped off. Isaiah has had some sores on his arms and legs that have not healed for many months now and we've tried everything to get them to heal and then a few weeks ago I was reading about what to do for sores that don't heal and it suggested HBOT treatments, why I didn't think of that before is beyond me, oh well I'm just thankful that the dives have a double blessing for our family and that Isaiah's arms are finally healing.

Please pray that Luke will stay still today during his CT chest scan

Luke goes into the CT scan today at 10:30 a.m. I would appreciate your prayers during that time, specifically praying that he will stay still, they are going to try to do the scan without sedation, which would be wonderful. If he does move then they will take him back to sedate him and then try the scan again. I am praying and believing that this scan will show the Dr. that Luke's lungs are healing and getting better, for I know that nothing is too difficult for God.

Would you also say a prayer for my Uncle David, he had open heart surgery yesterday. I took my mom up to the Veterans Hospital in Seattle to see him last night and even though he looked terrible we were assured that he is actually doing good for someone that had been through to 2 surgeries, the first one was about 6 hours and the second one to stop some internal bleeding was another 2 hours long. Please pray for no more complications and a quick recovery time.

Love in Christ,
Luke's Mommy Sue

Still trying to process Luke's Pulmonologist Appointment, deciding to Trust God but it's not easy

I was really dreading Luke' s Pulmonology appointment, I knew that if I was completely honest with his Dr. then I might hear things I did not want to hear and I was right. To be honest it is sooooo hard to continue to trust God in all things, that is so easy to say, not always easy to live. As you know from previous posts our nights are extremely challenging to say the least. It's rare, in fact I can't remember the last time I had a full night of sleep here at home, I know that I have, I just can't remember the last time. I shared with the Dr. about our challenging nights, including telling him about the times that Luke decides to just stop breathing sending his o2 numbers dangerously low, along with the fact that he's on oxygen most nights of the week. After his Dr. listened to his lungs, looked at his recent x-rays and heard what I had to say he wants me to take Luke in to get a chest CT scan, he thinks that Luke might have bronchiectasis, which is a disease where the bronchial tubes enlarge, causing a person to have constant coughing that produces a lot of phlegm, it also causes that person to need extra oxygen. He also mentioned the fact that Luke is probably going to need a trache again. That word trache sends me into a super spin, I now can think of many questions I should of asked the Dr. but I was put into a panic the second I heard that T word. I guess in the back of my mind I've been wondering if that is where Luke is going to again, not wanting to believe it though.

After the appointment I took Luke on a 3 plus mile walk at a park near the hospital, it was good to get out, I needed to cry a few or okay a lot of tears. I've been asking myself why I hate the trache so much, I mean in some ways it would bring some relief and help to our family in the fact that we would once again be able to get nursing care, but then on the flip side that means we have to have nurses in our home again, we were blessed last time to get some wonderful nurses, but that took time going through some nightmare nurses, to get the good ones.

I guess the things that bother me the most about Luke getting a trache again is:
1. Feels like we are regressing in his progress.
2. He loses the ability to make noises, without the help of a trache covering.
3. Only people that are trache certified are able to watch him.
4. I don't know how we will be able to take a kid with a trache camping.
5. The costs associated with a trache are huge, even after our insurance paid their part we often had to fork out another $200 to $400 a month.
6. You are never, ever supposed to leave a child with a trache unattended in a room.
7. The fact that he will have to go through another major surgery.
8. He will have a hole in his neck, the chances of coming down with more infections and problems are greatly increased.
9. I just don't want to go down this road again!

After crying many hours I've once again had to come to the realization that God is in control, getting a trache again doesn't mean that Luke is not going to be healed, it just means it's another road we have to take on this journey that we never wanted to go on, a painful road. I know that God is faithful and He will give us the strength we need to get through this journey, I know that I know that this is true, it's what keeps me going.

Nothing is going to happen for sure for at least another 3 months, a lot can happen in the 3 months, I am going to be praying that God will reach down and miraculously heal Luke's lungs, that when he goes in for his chest CT scan next month, his lungs will look great. I know that God is the God of miracles, nothing and I mean nothing is impossible for him to do. Would you please join us in believing for this miracle?? It's comforting to know that others are going to be joining us in believing us for this miracle, please let us know if you will in faith believe with us for this miracle.

Love in Christ,
Luke' s Mommy Sue

PS Just had to share with you two excerpts from The Streams in the Desert devotional:
April 12 - Extraordinary afflictions are not always the punishment of extraordinary sins but are sometimes the trials resulting from God's extraordinary gifts. God uses many sharp-cutting instruments, and polishes His jewels with files that are rough. And those saints He especially loves, and desires to make shine the most brilliantly, will often feel His tools upon them. R. Leighton - This reminded me of how much God must love me because I've been feeling the pain of those tools on me lately.
April 13 - Have you been looking forward to telling about trusting Jesus, but instead He is asking you to show what trust is, by waiting? YES!!!!

PSS Please keep baby Jake's parents and family in your prayers, he went home to be with Jesus and they are grieving his loss. Also please continue to keep Annie's family in your prayers, I know that they are feeling her loss greatly.

No Pump trial for Luke today. Please join with me in praying for Lance, Samuel, Jake, Juan and Annie's Family.

Just wanted y'all to know that I got a call yesterday telling me that we needed to reschedule Luke's Baclafen Pump trial, I guess they have too many people out right now suffering from the flu. The soonest they could reschedule Luke was in May, oh well I figure God is in control, I have to trust Him to direct us as we seek to get the care that Luke needs right now.

Please be praying for Lance today at noon, he is having surgery on his finger to fix his severly broken bone. Last week Amy and Lance went bowling and Lance hurt his finger, at first he thought it was just badly jammed, but after spending 4 hours in the ER he discovered he broke it so badly that they are going to have to put a small screw in it to fix it.

I would also like to ask for prayers for Isaiah, he has been dealing with some sores that just won't go away on his arms, I took him into the Dr. last week to find out he has an infection in hair folicles, he was literally covered with small sores all over his upper arms. After being on a heavy duty antibiotic this week they are still not clearing up, if they are not completely better by today I will be taking him back in once again to see what else we can do to get these sores taken care. I'm praying they will be gone when he wakes up tomorrow.

Just a few more prayer requests to mention: Samuel is going in today to get his baclafen pump removed after having it for the last 5+ years, pray that his surgery goes fine and that he will have a quick recovery. Please continue to keep Annie's family in your prayers, her memorial sevice is this Saturday. A little tiny premature baby named Jake was born last week weighing only 1 pound 10 ounces and while he is actually breathing on his own he needs lots of prayers to grow enough for his parents Liz and Bryan to take him home. And last but not least my good friend Yoli's husband Juan is coming home after being stationed in TX the last year, please pray that he will have a safe journey home as he travels by himself for 2 1/2 straight days to get here.

Thank you in advance for your prayers, they are POWERFUL!!!

Love in Christ,
Luke's Mommy Sue

Birthday's, birthday's, birthday's, seems like we are always celebrating someone's birthday: - )

Here is Luke getting ready to blow out the candles on his cake

Luke got a very soft blanket from Tia Yoli, he was feeling it and you can see from his facial expression loving it!

I thought this poster pretty much captures what Luke's life is all about, God has always been right by his side, no matter what he is going through.

Sorry the pictures didn't turn out better, we should have made sure we had a few good shots. Luke has been doing pretty good lately, his days are good, his nights still a challenge. I can not remember the last time we had a full night of sleep, I know that I've already shared that with you, but it still continues to be a challenge. Luke's appointment with his pulmonologist has been re-scheduled 3 times now; his Pulmonologist has been dealing with the death of his mom, please say a prayer that God will comfort Dr. R during this time of grieving the loss of his mom. I hope that when we do see him in two weeks that perhaps he will be able to find some answers to helping Luke do better at night.

Luke has a Baclafen pump trial set up for this Wednesday morning, we have to have him at the hospital at 6 am for the sedation process, he will then have Baclafen injected into his spinal cord. Baclafen is a muscle relaxant, he currently takes 20 milligrams 3 times a day, but we are not able to get enough into him to really loosen him up because it causes him to get very tired. The pump, which is a little bit smaller than a small can of tuna, is put into the body, it is filled with baclafen, a small catheter is put directly into the spine, which is then able to bypass the brain, making the Baclafen to do the job of helping to relax his muscle with out the negative side effects. We did this trial once before, not seeing much changes in his tone issues, the Dr. thinks that we could of doubled the dose they gave him last time, therefore we are going to try it one more time to see if the double dose does him more good. Please be praying for us to have wisdom in this whole process, the thought of putting a foreign object into Luke's body is unsettling to say the least but I know of so many kids who have a pump and it has made them so much more comfortable and able to bend better. Also be praying for safety for Luke while is sedated, it's always a bit scary to put him under for any amount of time.

On to some other news, this past weekend was filled with Birthday parties. We had a surprise birthday party for Lance, who is Amy's boyfriend on Saturday night. It was a lot of fun, very loud and crazy as we had 35 people over to help us celebrate. We had a taco feed, just to give you a small glimpse into how much food it took to feed all those people, we cooked up 9 pounds of taco meat, we still have leftovers, cut up two heads of lettuce, 4 cans of olives, a box of tomato's, had Lance's soon to be step mom make up some delicious homemade salsa, Yoli made a chocolate cake and a pineapple upside down cake add to that lots of ice cream and other ingredients, along with soda's for everyone and you have a whole lot of food.

Then on Sunday we celebrated my Mom's 75th Birthday, thankfully mom decided ahead of time that she wanted to go out to eat for her birthday. I am so blessed to have such a wonderful mom, she faithfully prays for Luke and our family, she is a wonderful example of a Godly woman, who sacrificially gives of her time and herself to bless our whole family.

I was asked to join the Family Advocacy Council at Mary Bridge Hospital, tonight was my first meeting. I'm excited to think that perhaps I can help make Mary Bridge a better hospital, though I already think the staff does a good job there. My prayer has always been for God to use me where he chooses to lead me. There have been many times that I have wondered why God has allowed Luke to be admitted into the Hospital so many times, I now realize that perhaps God was allowing us to go through those experiences so that we could perhaps help those that come behind us, at least I hope so.

Oh my goodness, another really long post, I really will try to keep my next post shorter.

Love in Christ,

Luke’s Mommy Sue

PS Please be sure to keep Annie’s family in your prayers, her memorial service will be held this Saturday.

Annie Sullivan went home to be with Jesus this morning, please keep her family in your prayers today

Annie went to be with Jesus this morning. I went up to visit Annie and her mom Jean on Wednesday evening at Children's Hospital in Seattle. When I got up there Annie was acting rather strange for herself, she had a seizure and then starting to get very agitated. I noticed her heart rate going up and asked Jean if perhaps she had a fever, sure enough when the nurse came into check her temp, she had a fever. After awhile her sweet brothers came to visit her, they were so kind and compassionate and concerned for her well being, they kept saying that she was shaking and seemed very upset. I left shortly after the Dr. came into check out her progress, knowing that the best thing I could do for their family at that time was keep praying, which I did the whole way home. I left with a heavy heart realizing all to well what kind of stress and pain Jean and her boys were going through watching Annie suffer that evening.

I found out this morning that Annie went home to be with Jesus, the thought of her in heaven running around with a new body, singing and talking without any effort brings joy to my heart. I also find that the thought of what Jean and her husband Bill along with their other 6 children are going through at this time is heartbreaking. Annie and Luke were only a few weeks apart in age and while though their stories and diagnoses were different they both shared many common things in their lives, the doctors, hospital stays, pain, brain injuries, their large families and their families' faith in God. Please keep Annie's family in your prayers as they mourn the loss of their precious daughter and sister. To read more about Annie's journey the last few years just go to the prayers links on the left of Luke's blog and click Pray for Annie.

Love in Christ,

Luke' s Mommy Sue

Being woke up numerous times a night + Realizing we are NOT a "normal" family+ Walking faithfully = A Post that is way too long!

You would think that after living this life that we have been living for so many years that I would be used to the fact that I never really get a full night sleep. Being woke up numerous times a night by alarms is in fact extremely exhausting and it has been getting me down lately. The last few nights have been soooooo hard, I wake up out of a deep sleep after only sleeping a few hours to hear the oximeter alarms going off and then by the time I do jump out of bed realizing that it is Luke's alarm going off I get woke up all the way to a adrenaline rush by seeing the fact that he is in the low 70's or the 80's, for you that don't know that is dangerously low oxygen numbers. I always check his finger probe to be sure it's on correctly, if it is then I move him, check his oxygen tank to be sure it's not empty, suction him if he needs it and then make sure his cannula has not fallen out of his nose again. Usually his numbers come up rather quickly once I get all that done and then go fall back into bed, only to be woke up again and again and again to go through those same things over and over and over again, night after night after night, I think you get the picture.

This morning I woke up in tears, telling Gordy that something has to change in our lives getting no sleep is taking a toll on both of us. Somedays I'm able to go back to sleep for a few hours, but most days I have to get up of course to get Luke bathed and fed and get my day going. People ask me all the time why I don't take naps, for one thing I've never liked taking naps, my personality type just doesn't see them as something that is productive, also it's challenging to find the time in my days to take a nap. People also tell me all the time that I need to go to bed earlier, but I will be honest with you I would rather stay up late if Luke is having a hard night than to go to bed and be woke up time and time again. There is also the fear factor when he is doing really bad knowing that if I do go to sleep I may not wake up in time to help him because I won't hear his alarm. I'm thankful for the fact that I've always been a pretty energetic person, relying on God for His amazing strength and help is the only thing that has gotten me through these past years, but I will be honest it has taken a toll on my life and I would appreciate it if you would really start to specifically pray that Luke would start to breath better at night so that Gordy and I can get some really good sleep in our lives once again.

I've come to the realization this week, which many of you already know, that we are NOT a "normal" family. As much as I like to think of us being like other people out there we just aren't. That too has been a bit of a depressing thought for me, not that I want to be just like everyone else I never really have, but I do wish that our life could be just a bit easier at times. You see for many, many years now we have dreamed about taking a trip across America, I've always wanted to go to Washington DC. When Gordy first started working at REI 20+ years ago we knew that one of the perks working there was the fact that he would get a 4 week sabbatical once he was there for 15 years, 5 weeks at 20 years, every 5 years would add another week onto his sabbitcal. We began to think and dream about the time that we could take that sabbatical and go across America with the family. He hit 15 years 1 year after Luke's accident and we knew that we couldn't possibly take our family across America with Luke's special needs, but being the optimistic person that I normally am I thought that perhaps we could do it after waiting for 5 years. He was supposed to take his 20 year sabbitical last year but thankfully REI had mercy on him and let him delay it a year, because Luke had pneumonia almost 4 straight months and we knew that he just wasn't healthy enough to go at that time. Once again we thought perhaps we would be able to do it this year but after Luke's recent stay at the hospital it has come to our realization that Luke is just too fragile to take across America and he would be absolutely miserable traveling in a van for hours on end, day after day.

To be honest with you this realization has really knocked me for a loop, everytime I think about it I want to cry and then I think to myself Sue get real, there are people in Japan right now just trying not to starve to death or they are still not sure if their loved ones lived or died during the earthquake, there are people out there that have never taken a vacation and you have taken so many, there are people out there that are hungry and would love to just eat 3 meals a day, there are people out there that are out of work and desperately needing a job, there are people out there that are homeless, there are people out there that have just lost a loved one, there are people out there that . . . . I know that with time I will be okay with not taking this trip, it just hurts right now.

At the beginning of the year I decided that I was going to start walking again, I made a new year's resolution of walking everyday this year, I quickly realized that was just a bit over zealous so I said that I would walk at least 5 days a week, so far I have averaged about 6 days a week, walking at least 3 to 5 miles a day. Walking has been really good for me, for many reasons of course one thing it has helped me to lose 20 pounds so far, which is about a third of the weight I want to lose, it has also helped me to get in better shape, it helps me to clear my mind and to spend sometime listening to worship music and spend some time in prayer, it has given me something to look forward to on those rare days that it is beautiful outside. For so many years I have blamed being "fat" on the fact that I have so much stress in my life I can't take the time to do this for myself, also I've blamed it on the fact that my thyroid is messed up, but I've decided enough excuses I'm sick and tired of being uncomfortable with the way that I look and feel and I'm going to do something about it. With God's help I'm going to keep walking and perhaps one day be a whole lot healthier.

I realize this post is mostly about my "sad" life, sorry if I have sounded like I'm feeling sorry for myself, perhaps I was:-/ I try not to dwell on the fact that our life is so challenging, but since this is my journal of Luke's journey since his accident I needed to share this if nothing else but for myself, because you see I don't plan on staying this way for long. I know without a shadow of a doubt that I will overcome this feeling of discouragement and weariness, because I know my God is faithful and He has promised to never leave me or forsake me, He has told me that if ask Him to carry my burdens He will, He has also promised me that I can do ALL things through Christ who gives me strength, He has also promised me that if I wait upon Him, He will renew my strength, I will mount up with wings as eagles, I will run and not grow weary, I walk and not faint, if I can only learn how to wait upon Him and trust Him to be my all and all.

Before I sign off I do want to let you know how Luke is doing. I did end up taking him into Urgent Care on Sunday, the Dr. there thought he had pneumonia, but I'm not sure because his x-rays are always cloudy looking. He is doing better, tonight being the best night he's had in a long time Praise God. I promise to sit down again soon and post some pictures from Luke's birthday party and give you some more details about all Luke's appointments he has scheduled for next week.

Love in Christ,
Luke's Mommy Sue

PS PLEASE pray for Annie, her blog is posted to the right, she has been in the hospital for about a month and desperately needs a touch from Jesus today.

Your prayers were answered Gordy and I had a wonderful time away: - ) But once again Luke is in need of some prayers, he's sick again.

Multnomah Falls, Oregon

All week I've been wanting to sit down and let y'all know about the wonderful, relaxing time that Gordy and I had together on our get away, but to be honest I couldn't seem to find the energy to do it. God must of known we really needed the sleep and relaxation because we've come home to many sleepless nights once again. Yep, you heard right Luke is not doing so well once again. I was so excited to get some uninterrupted nights of sleep but I found the first two nights my body is so used to be woken up many times a night that I would still wake up about every one to two hours. Finally the 3rd night away I slept all the way through and the last night was the most restful sleep I've had in a long time.

Here is the first falls we stopped at we mistakingly thought this was Multnomah Falls, not even close to the beauty and height of the real thing.This is Gordy and I after our 2 mile round trip up to the top of the falls to overlook them, it was a tough hike at times but so worth it, it was so beautiful and magnificent.

Here I am by the river at the top before the falls, I love rivers it's one of the most relaxing thing in the world to sit by them and enjoy the music they make.
This Seagull adopted our deck at our Hotel in Lincoln City, we decided to name him Charlie

One of my many walks on the freezing cold, windy beach. Can you see the sand that was blown onto my face? It was so windy I thought it would knock me over.

This was a new beach we discovered on our way home. It's called Oswald Beach you have to walk about a mile to get to it and boy is it worth the walk it was gorgeous.

When we were down at the beach we saw a huge black cloud coming our way, it started raining as we left the beach, this is a cool picture with the raindrops on the rocks there. By the time we got back to our car we were both wet, but thankful we got there when we did because the downpour began once we left the parking lot. What great memories!

Please be praying for Luke he had a very rough night and so far today has been battling a high heart rate, is very congested coughing out greenish/yellowish gunk, along with being on extra oxygen today. I'm debating whether to take him into Urgent Care, I don't think he has pneumonia, hasn't had a high enough fever for that it's only been a low grade fever.

Love in Christ,
Luke's Mommy Sue

Luke is doing okay, not great, please continue to keep him in your prayers

Thank you for your prayers:- ) Gordy and I are having a wonderful relaxing time. Yesterday we climbed 2 plus miles to get to the top of Multnomah Falls and back down, it was a challenging hike but definitely worth the effort. Wish I could upload a picture from my phone but I don't know how to, oh well I'll do it when we get home. Currently we are staying at a hotel right on the beach in Lincoln City, OR. The view from our room is amazing! I'm getting ready to go for a long walk on the beach, looking forward to some prayer time during my walk, I always feel so close to God when I'm at the ocean.

The kids are doing good at home, of course they miss us and we miss them but we know we will definitely be better parents after this time away. Luke is doing okay he was on more oxygen than I would like to see last night at Yoli's house, but not enough to warrant coming home a day early. Please continue to keep him in your prayers, thank you.

Love in Christ,
Luke's Mommy Sue

Would you please keep our family in your prayers the next few days?

Would you please keep our family in your prayers this weekend?? Gordy and I are going away for a few nights of much needed sleep and relaxation. PLEASE pray for Luke to stay healthy, he's been having some rough days and nights lately, we leave feeling a bit apprehensive about leaving him, but we know that we are in desperate need of some sleep, sleepless nights do catch up with a person after awhile. Also be praying for the rest of the kids to stay healthy and be good while we are gone. Natalie and Josh are staying with the kids all day Saturday and Sunday, Luke is going to Tia Yoli's house on Sunday night and then Amy is filling in the rest of the time while we are gone.

Thank you in advance for your prayers, they are so powerful!

Love in Christ,
Luke's Mommy Sue

Happy 8th Birthday Luke, we are so blessed to have you in our lives!!

Luke at Christmas

Luke giving flowers to his PT and OT last year at the Stars Program

Mother's Day out for a walk with all the kids

Luke hanging out at Cannon Beach last September

Luke and Lily at the park on July 4th

Just hanging out all dressed up with no place to go

Luke in the Hyperbaric Chamber during one of the
dives he was blessed with from the HUGS foundation

Delivering Christmas cookies and sing carols on Christmas Eve

Getting ready to leave the Dr.'s office the day before he ended up in the hospital

Getting a breathing treatment during his hospital stay

Imitate those who through faith and patience inherit what has been promised Hebrew 6:12

I'm continually amazed at how God can allow a book such as The Streams in the Dessert, to minister to me time and time again. God is so faithful to remind me of His promises, which are written all through out the Bible. Today I want to share with you the reading from March 4th.

The biblical heroes of faith call to us from the heights they have won, encouraging us that what man once did, man can do again. They remind us not only of the necessity of faith but also of the patience required for faith's work to be perfected. May we fear attempting to remove ourselves from the hands of our heavenly Guide, or missing even one lesson of His loving discipline due to our discouragement or doubt.

An old village blacksmith once said, "there is only one thing I fear: being thrown onto the scrap heap. You see, in order to strengthen a piece of steel, I must first temper it. I heat it, hammer it, and then quickly plunge it into a bucket of cold water. Very soon I know whether it will accept the tempering process or simply fall to pieces. If, after one or two test, I see it will not allow itself to be tempered, I throw it onto the scrap heap, only to later sell it to the junkman for a few cents per pound.

I realize the Lord tests me in the same way: through fire, water, and heavy blows of His hammer. If I am unwilling to withstand the test, or prove to be unfit for His tempering process, I am afraid He may throw me onto the scrap heap."

When fire in your life is the hottest, stand still, for "later on . . . it produces a harvest" (Heb. 12:11) of blessings. Then we will be able to say with Job, "When he has tested me, I will come forth as gold: (Job 23:10). selected

Sainthood finds its source in suffering. Remember, it requires eleven tons of pressure on a piano's strings for it to be tuned. And God will tune you to perfect harmony with heaven's theme if you will withstand the strain.

Things that hurt and things that mar
Shape the man for perfect praise;
Shock and strain and ruin are
Friendlier than the smiling days.

After reading this entry in this precious book that has ministered to my heart so many times, I was once again reminded that God allows us to go through the fire so that we can come out stronger and to remind us that He has a plan for our lives. The time spent in the Hospital with Luke was unbearably hard at times. I kept asking God what his purpose in taking us back there was? But was unable to hear Him clearly during those extremely stressful days, I just knew that I needed to trust Him alone to bring Luke through another life threatening trial. I am so thankful that God's presence is so strong and that His peace and joy can sustain us through out our most challenging days and times.

Luke is doing so much better, he is getting more verbal all the time, I know that he calls out to us in his own way when he wants one of us to come to him, either to help him or just to be with him. Lately Lily has been expressing to me daily that she wants Luke to walk and talk, I keep reminding her that is exactly what we are praying for daily and believing with all our hearts it will happen soon.

Luke turns 8 on Thursday, March 10th, it's so hard to believe he is getting so old, but you can tell by looking at him he is definitely not that little boy he once was. His birthday is usually a hard time for me, as I so desperately want to keep him small enough to be able to hold him and carry him, but on the other hand I'm happy that he is turning another year older, one more year to be thankful to God for allowing Luke to still be with us here on earth.

Love in Christ,
Luke's Mommy Sue

PS Would you please pray for Annie today, her blog site is posted over to the left in the Prayer links, she has spent the last two weeks in the hospital and her body is currently rejecting any food they give her, she is in desperate need of a miracle today. Also keep Caleb in your prayers, he suffered from a severe seizure two weeks ago and his poor little body still keeps tremoring almost constantly.