Tuesday, April 26, 2011

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.

Saturday, April 23, 2011

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?

Wednesday, April 20, 2011

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

Thursday, April 14, 2011

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.