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.

Luke is home from the Hospital and doing great!

Thank you so much for all your prayers! Luke is doing so much better, he came home from the hospital on Tuesday afternoon, just in time to celebrate Natalie's 22nd Birthday. It was so amazing to see God answer one prayer after another, I know that some of the Dr.'s and staff were amazed to see how quickly Luke recovered from what was one of the worst pneumonia's he's ever had, it was scary to see how quickly it progressed from being basically nothing showing on the x-ray to it being a full blown pneumonia. I guess it just goes to show how fragile Luke's health can be at times.

I want to take the time soon to write out all that happened while Luke was in the hospital, but for tonight I thought y'all should know that he is doing so much better. He came home on 2 liters of oxygen and went for many hours today without needing any extra. I take him in for a follow up check up with his Pediatrician tomorrow afternoon, I'm so curious to see what his Dr. has to say about his speedy recovery, hoping to hear that his lungs are sounding better.

We are blessed beyond belief to have such wonderful friends and faithful prayer warriors in our lives. I know, that I know, that I know that without all the prayers going around the clock on Luke's behalf he wouldn't of made such a speedy recovery, THANK YOU!!

Love in Christ,
Luke's Mommy Sue

We can finally see a tiny light at the end of this nightmare tunnel we've been in this past week

Luke is doing sooooo much better today! He got his nasal trumpet out, he's gone way down on his oxygen needs, he's sounding better and way more alert. Praise God for His faithfulness and His amazing Healing Hand!

Please continue to pray that we can make huge progress in getting his oxygen needs down to a level that we can care for him at home. Also please say a prayer for me I seem to have caught some kind of cold with a very runny nose and a nasty little cough. I'm exhausted, this past week has been soooooo very stressful and it's has taken a huge toll on my body.

I realized today as I woke up that we've spent almost every holiday in the hospital, Easter, Halloween, 4th of July weekend, Labor Day, a week before Christmas and here we are on Valentines Day. Never in my wildest dreams did I ever think we would be back at this place and especially for this length of time. I won't lie, it's been very, very hard, I am so thankful for God's loving arms surrounding me and His constant reminders that I'm never, ever here alone, it's the only thing that's gotten me through this nightmare. I'm also thankful that I can see a light at the end of the tunnel.

Love in Christ,

Luke's mommy Sue

Sunday evening update

This is a post from Sue's FaceBook page.

Luke's Dr. came in a little bit ago to say she was surprised to see how well Luke's chest X-ray looked, his pneumonia is starting to clear up, still have a way to go but he is heading in the right direction. We also had greatly improved co2 numbers, down from 66 to 53, 50 is the highest it should be. Thanks for your prayers, they are working, please keep them coming!

FYI, I just got home from being with Sue and Luke at the hospital. Luke was resting and his oxygen levels were staying near 100%, which is great. Tomorrow they want to begin to wean him off the oxygen.

Thank you for praying, we really appreciate it very much.

Update for Saturday Morning

Thank you for praying. Luke had a good night. His numbers are improving very gradually. At this gradual pace of improvement, they say he will be in the hospital a while several days. Please pray that he will breath deep and they will be able to begin weaning him off the oxygen.

Sue was able to get a little bit of sleep last night too, so she is feeling a little better.

Thank you all you faithful prayer warriors, we could not make it on this journey without you.

Update

This is a roller coaster ride. Luke seems to be doing better, however his blood tests were not as good.

Luke needs to breath deeply

I just talked with Sue and Luke is not breathing deep enough to clear all the CO2. They are doing a blood test and if his CO2 level is not improved, he will need to go to the PICU (Pediatric Intensive Care Unit).

Would you pray for Luke? He really needs it.

"Lord, help Luke breath deeply! Amen"

Please join me in beliving God will perform a miracle for Luke TODAY!

• Please keep your prayers coming for Luke. We found out last night he has a very bad pneumonia on the left side of his lungs. There has been lots of talk about him going into the PICU, he is currently on the most oxygen that they can give him, his blood work shows severe infection going on.
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• I keep telling myself that I can do all things through Christ who gives me strength, it's what keeps me going.
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• Please join with me in believing for a miraculous touch today, for I truly know that ALL things are possible!
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• Love in Christ,
• Luke's Mommy Sue

So my dad just texted me and said that Luke is staying the night in the hospital. Not sure what he has yet. They think it might be pneumonia but aren't sure at the moment. Please continue to pray. Hospital stays are always hard on all of us. I will continue to keep you all posted as I find information out. Thanks for all the prayers.

God Bless,

Amy (Lukie's Sister)

Pray!

Hey All,

This is Amy and I am just filling in for Mom at the moment. They are at the hospital and really need your prayers! We don't really have much information at the moment but as soon as I do I will update the blog. Please pray. Thanks all.

Amy (Luke's Sister)

Luke desperately needs your prayers right now

Luke has taken a turn for the worse today, we are desperate for your prayers. If things don't change soon, I'm off to Urgent Care.

Love in Christ,
Luke's Mommy Sue

Luke could use your prayers today, he is one sick cookie boy!

Luke could use your prayers right now. Last night he came down with a very, very runny nose and cough, it was so bad it would make him throw up. After spending most of the night suctioning him, I thought perhaps he was doing a little better, but no it was only the respite before the huge storm. When I realized that his temp was at 104 and his heart rate was not coming down on top of the fact that he was on 2 to 3 liters of oxygen I thought I should take him into the Dr.'s office. They immediately sent Luke in for x-rays and lab work, the x-rays came back looking okay, no pneumonia, which is great news, but then it was the try to figure out what Luke did have game. It was kind of scary at times because for a while I thought we were on our way to the hospital, the Dr. thought that Luke should probably go there, but after asking what they could do that I couldn't it was decided to let me take him home with a bunch of directions to follow and to watch him closely to be sure that he was getting better.

All that to say Luke is doing a little better tonight, actually much better over the last two nights. His fever has finally come down to the low 100's, his heart rate has come down also, now we are just waiting for his oxygen levels to go back up. I hope and pray that tomorrow when we all wake up he will be doing great and that all the prayers were said today and last night will have done their wonderful job and that Luke will be feeling great once again.

I'm off to bed for what I'm hoping is a good, uninterrupted night of sleep, I can always hope can't I?? I am officially exhausted! I hope and pray that I will find the time soon to update the blog with other news and put up some pictures.

Love in Christ,
Luke's Mommy Sue

Today was a Super Great Day!

Today was a great day! I wasn't sure if I would be able to get out of bed after only getting a few hours of sleep last night, but I was so glad I did. Even though Luke is doing really good during the day lately, nights still seem to be a challenge with his oxygen numbers going too low, but thankfully the joy of the Lord was my strength today and I ended up with enough energy to make it through the day, even ended the day with another 45 minutes of exercise this evening.
Guess what??? Luke received this beautiful quilt you see in the picture above from a sweet group of ladies, The Circle of Hope, they volunteer to make quilts for children that are medically fragile. Luke's name had been on the list for over a year and he finally got his beautiful amazing quilt. The picture is not that great, I will try to get another picture of it posted here to show you how amazing it really is, thank you Kate, you are amazing.
Today after church we went to our local Godfather's pizza to celebrate my niece's birthdays, Janell turned 21 this week and Naomi is getting too old to say her age, haha. As you can see by the pictures it was wear a fake mustache day. Luke wore his for a few minutes before it finally feel off. He really seemed to enjoy himself there surrounded by so many people that love him so much.
Natalie made the cute cupcake hats both Naomi and Janell are wearing, they turned out so cute, with the sprinkles and cherry on top. I keep telling Natalie that she could make some serious money if she would take orders for hats, afghan blankets, sweaters, shawls, scarfs etc, she is so amazingly talented.
After we came home from Godfathers, Natalie and I went on a power walk, had to walk off the pizza we ate. We than played a very fun game of Settler's of Catan. As you can see Luke is enjoying the game with us, he usually sits on my lap while we play family games, I call him my good luck charm.

Here we are messy hair and all, Luke, Zeke and I played on the same team and got stomped by Daniel.
The day wouldn't be complete without Amy "stealing away" my camera to take about a dozen plus pictures of her and Lance her boyfriend. Some of them were pretty crazy shots, but I thought I would be nice and post a sweet one.

Next week will be very full with appointments for Luke, hoping to get him into the HBOT chamber at least twice this week. Praying that I will be able to get more sleep at night, I know that it would help me immensely to be able to get up earlier in the morning, for as you all know mornings are the best time of the day to be productive, at least I think this is true for that is what I've been told. Please be praying that Luke will stop alarming at night, it is so unnerving to be woke up constantly by alarms, Friday night was a nightmare, I was up every hour at least once, thank goodness last night was a little better, at least I got a few hours of uninterrupted sleep. I'm so thankful that God is always by my side giving me the strength that I need to get through another day!

Love in Christ,
Luke's Mommy Sue

Food making + trip over the mountain + advocating in Olympia + prayers that Luke doesn't get the Chicken pox = This POST!

As you can see by the picture posted below we made Luke's food last week. I was blessed by the fact that Natalie, Amy, Lance & my nephew Jamison were there to help. Natalie had to leave a bit early and Bonnie who usually comes to help had the chicken pox, so needless to say it took quite a bit longer than usual to get it all done. I think I washed dishes for almost an hour. Oh well, it's done until sometime in March.
As I mentioned above Bonnie came down with the chicken pox last week and I really had to give my fear of Luke getting them over to God. Isaiah did come down with a very light case of chicken pox last weekend, because he had the shot he ended up only having a few bumps break out. I'm praying that Luke does not get them, for one thing it would be so uncomfortable for him since he doesn't really know how to itch himself if he gets itchy and for the reason that in some kids the chicken pox can cause pneumonia during their break out. Please join me in prayers believing that none of the other kids will get them.

Since our schedule was empty for the weekend I decided to take Zeke and Lily over to visit my sister Lori and her husband Lonnie. We left late afternoon on Friday and got home Monday night. It was so wonderful to be able to get some uninterrupted sleep, spend a very lazy Saturday doing what ever we wanted to do and then to just spend time with Zeke and Lily reading to me. I know that we were all blessed by our time there, the pictures below were taken from their back porch, if you look really closely you will see the mighty Columbia river off in the distance.


We had a blast going bowling on Sunday night at the tiny Lake Chelan Bowling Alley and I actually got a few strikes, miracles still happen!

The drive home was so amazing, the kids had been asking to eat at McDonald's all weekend and since we've not been there in a long time we stopped at Leavenworth. We then took a bit of a break and went on a nice walk in the cold brisk air before traveling on over Stevens Pass. It was absolutely beautiful as we drove over the pass, I LOVE looking a rivers and the river on this pass is one of my favorites!
As I mentioned awhile ago I'm currently involved in a Advocacy Leadership Training course in Pierce County. This evening our class went to The Community of People with Disabilities of Washington State Legislature Reception down in Olympia at our beautiful capital building. To be honest with y'all I wasn't really wanting to go, Luke had been having a rough day, his heart rate was high all day, just acting like he was going to get sick, but no fever and oxygen levels were fine, needless to say I decided to go, Amy assured me that she was okay watching him while I was gone. I'm so glad I went, I was able to talk with two of my Legislators and have been invited to join one of them on a brain storming session on what we can do to help the people with disabilities who are currently not getting any assistance at all in our state, Luke being one of those people, get the assistance that they really need. I was also able to connect with many other people there that are constantly looking for people willing to share their stories at the hearings, needless to say they are very excited about the fact that I would be willing to go share my story down in Olympia. Now I just need to find the time to fit this very important task into my already very busy schedule.
I'm so happy to report to y'all that Luke is doing so much better tonight, his heart rate is back to normal and he's just on a little bit of extra oxygen.

Love in Christ,
Luke's Mommy Sue