Sunday, January 23, 2011

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

Wednesday, January 19, 2011

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

Sunday, January 09, 2011

All dressed up and no place to go

Both Luke and I are all ready to go to church, but since it is almost over we are sitting here listening to worship music wishing that our church started a bit later. Though we realize that's silly since it already starts at 10:30, which seems to be a pretty good time for the majority of the people. Luke has been doing great this week as far as his oxygen levels have been going, which has been a huge answer to prayer, but of course it seems once we get one reason taken care of not getting any sleep there seems to be another one. For some reason Luke decided that he wanted to wake up and yell for me to be by his side from about 1 a.m. to 2 a.m. last night. Needless to say getting to bed that late it get's a bit challenging to get up really early for church. Oh well, perhaps we will be there on time next week.

I'm pretty sure that I mentioned in our last blog posting that we were blessed to get 20 HBOT dives donated to Luke from the HUGS Foundation. If you are ever looking for a place to bless those that need your support the HUGS Foundation is surely a very viable place, they have blessed many children that have suffered from near drowning accidents. Please check out their website, it is, which is always posted on the side of Luke's blog in his blogger friend link section off to the right. I've been wanting to get Luke back into the chamber for many months now, but money and time has restrained me from taking him, now that the money has been generously donated I will find the time to take him at least 2 to 3 times a week until all the dives are done. HBOT has been known to help Luke's muscle tone issues, his eyes have gotten better with tracking, it has also helped his seizures and keeps him generally more healthy.

This week my good friend Yoli was blessed to have a visit by her sister Becky who is from CA. Becky has generously opened her home many times to our family and to those that have gone on missions trip down to Mexico. It was so wonderful to be able to bless her and her grandson Aidan, we had them over for lasagna on Wednesday night. Then on Thursday we went to Poulsbo for the day. While Becky, Yoli and I did a little shopping the girls did some painting. There is a wonderful place there where you can sit and paint for hours, we all had a wonderful day.

Thank you for your prayers, I'm doing much better, getting a little more sleep has really helped me. Santana is home from the hospital and he is doing better, though still needs a complete healing from his surgery site that is still bleeding a little bit. Jerry could still use your prayers, he has had a few set backs from another surgery he had two weeks ago, though doing a little better now. His wife Brenda needs prayer for wisdom as she needs to know where to get Jerry the best help that he needs right now in his recovery of the anoxic brain injury that he suffered on the operation table in November, during his kidney transplant. They have 5 children at home, so Brenda is juggling working full time, while keeping the kids and her home in order and then trying to get up to see Jerry as often as she can, he is in a Hospital in Seattle which is a good hour drive from their home. Also please pray that these HBOT treatments for Luke will help get his knee's to bend. Thank you for your faithful prayers, we sure do appreciate you!

Love in Christ,
Luke's Mommy Sue

Wednesday, January 05, 2011

Lot's and lot's of pictures from December!

Our Lily Joy is 6, she had a Birthday on December 20th
She had a Tea Party Birthday Party at Tia Yoli's house
Here we are at the party
Every Christmas Eve we always go Christmas Caroling,
delivering a plate of goodies to our neighbors
Christmas Morning

Natalie was so excited to give Luke this beautiful blanket that
she made for him, she is so talented!

Christmas Breakfast, we always have Apple bread pudding
a old family recipe passed down by my Father's Mother.
Boys will be boys, doesn't matter what age they are!
Here is Luke with Daniel on Daniel's adoption day
Daniel with his new family, Juan, Yoli, Spencer, Bonnie and Karlos Rodriguez
Me and my girls waiting to go into the court room to make Daniel's adoption official
Here are Yoli and I on the first day of the year, our goal this year is to walk everyday, so far we have meet our goal, wish us luck to complete our goal. It was freezing cold!

Tuesday, January 04, 2011

Here is a brutally honest review of an extremely challenging and hard month, please try not to judge me to harshly

Sometimes, especially lately I wonder why do I keep this blog going??? I was just sitting down talking to Gordy about it the other day wondering if anyone really ever reads it anymore or is interested in our lives?? Because I think why would they be? We are just ordinary people living our lives like so many of you out there in the world. Then I hear from people that I run into and find out that they are wondering why I haven't posted in awhile or some of them wondering how Luke is doing right now, so I think to myself I guess people really do care, perhaps I should be better about keeping it updated. So that is one of my goals this year, I hope to post more pictures and blog updates, trying to keep them shorter, because I know that when a post get's too long it's hard to keep reading and reading and reading it. Just to warn you this post may be a bit longer than usual because I've neglected posting for so long: - /

December was a very challenging month, to say the least. But perhaps I should go back a week and say that the last week in November was equally challenging. Luke was sick and I was getting over my bronchitis, therefore causing Luke and I to stay home on Thanksgiving while the rest of the family went up to Seattle to visit Gordy's sister Pam and her family that day. It was a very hard day for me to say the least.

The first weekend, I went to a seminar on how to be a better advocate for the community of disabled persons in our county. It was in Olympia, we did a mock Legislature session to see what it would be like to testify in front of a hearing and though I have testified at hearings before many years ago, it was a very good refresher course for me. It was extremely hard to sit and listen to all the tragic stories of people in our state that are losing some of their benefits and services. Our state, like many other states is in a financial crisis, therefore they are having to cut many things out of the budget to make it balance. The saddest part of the cuts is that people will end up in the Hospital's because they are unable to get the health care they desperately need. Long, very long story short it was a very stressful weekend for me. I came home from that weekend with hives all over my body, except on my face, I went to urgent care to find out I was having an allergic reaction to the Amoxicillion I had been on for my Bronchitis, thankfully it cleared up within a few days.

The second weekend we then experienced one of the most terrifying things that has happened in a long time. Friday night the 10th, Luke decided to stop breathing. We could not wake him up or get him to start for a few minutes, we were just about to call 911, when God finally answered our prayers and helped Luke to start to breathe once again. We had been trying a new medication to help with Luke's muscle tone issues and I believe it caused him to relax to the point that he just stopped breathing. It was not the first time we had dealt with him desatting, we had been dealing with it for a few weeks before this, but not to this extreme, thankfully getting him off that med has really helped him to get better in this area of his life.

Needless to say this caused me great panic and some fear, I began to wonder if I could really ever sleep at night knowing that if I didn't hear Luke's alarms we could lose him. I know these fears were irrational at times, but real nevertheless very real to me. To say that this has been a month of very little sleep would be a HUGE understatement. No sleep causes all kinds of problems in our lives, of course it causes foggy thinking, extreme fatigue, depression and for me some anxiety and panic problems. Yep, there you go I'm admitting that I was depressed most of the month, I woke up with some panic attacks, severe stress, lots of crying, not really feeling like celebrating Christmas, pains and aches, all kinds of problems. I've had a few people tell me lately that I'm an inspiration to them, it makes me feel very uncomfortable to think that because deep inside I keep telling myself DON'T think that about me, if you only knew my thoughts you wouldn't think that anymore. I debated long and hard about whether to share these thoughts with you, but decided that yes, you need to know that I struggle just like some of you do with my thoughts and doubts in my life.

I know that God can and will continue to bring me out my depression and that he will continue to give me the strength that I need to continue on this journey that He's chosen for me to go on. For me to lose my faith and hope would be like a death sentence to me, therefore I chose no matter how hard it is and how long this journey lasts not to lose my hope. I will admit that I can not go through this alone, without the prayers and help from so many of you out there I don't know if I would be able to go on. I realize that we are all stronger when we share each others burdens and when we all do our part of lifting each other up in prayer. I guess that is why I'm being so brutally honest with y'all out there, in part because I need your prayers, but also because I want to pray for you if you need prayers. That is one of the greatest parts of being a part of the Family of God we all can carry each others burdens, that is when we are brave enough to share them with others.

Just wanted to let you know that there was many good things that happened in December too, Luke was blessed by the HUGS Foundation with enough money to have 20 Hyperbaric dives. I'm hoping that these dives will help him with his muscle tone issues and with the seizures that he's been having lately. My dear friend Yoli and Juan adopted their precious little Daniel into their family in December, which was a huge answer to prayer. Lily celebrated her 6th birthday. We were blessed to have a wonderful Christmas, full of God's richest blessings poured out upon our family, a delightful weekend full of lots of family, friends, gifts, great food and full of wonderful memories.

Love in Christ,
Luke's Mommy Sue

PS Please keep Santana in your prayers he had back surgery last week and he has been having a hard time recovering from it. Jerry who had a kidney transplant in November suffered an anoxic brain injury during the surgery and is in desperate need of a miraculous touch, along with his wife Brenda and 5 children who all need prayers for strength and continued hope. Noah has been having lots of headaches and weakness lately, his Mito disease is progressing and he is losing more ground everyday. Kehau is pregnant, due in January with her third child, along with Caleb who has severe physical needs, found out that her husband wants a divorce, she needs a miracle in her marriage, Annie a dear friend needs a physical touch from Jesus. Teresa needs a healing touch for her body as she is trying to get over the pneumonia that she has been dealing with for weeks. So many HUGE needs, it's comforting to know that we serve a HUGE God, who hears our cries and answers our prayers.