Monday, June 20, 2011

Our very challenging and difficult day at Disneyland with Luke: -(

All the planning in the world can not change the fact that Luke can not tolerate the heat and he does not like being in his stroller/wheelchair for hours. After staying up way to late getting as many details together as I could for our day at Disneyland and then getting up by 6 am to get ready to go, we still had to come back to the trailer, Luke just could not handle the heat. Gordy stayed at Disneyland with the kids, while I decided to bring Luke back for his vest treatment, to give him a break and to feed him. To say this has been a challenging day is putting it mildly.

The memories of when we where here with Luke last time keep coming to my mind. Our family had gone to Disneyland a few weeks before Luke's accident and I keep thinking about the last time he was there, running, playing, laughing, having the time of his life. Days like today make me realize how much our lives have truly changed, nothing and I mean nothing is easy anymore. I know that I need to get over it and just try to enjoy the day we have, but the tears keep coming. I was so stupid to think that we could take Luke to Disneyland in June, when it's hot, for that matter any day at all, it's just not something that he will ever enjoy again, until God heals him.

I try so hard to keep a good attitude, but today has not been easy. I keep asking myself when am I finally going to realize that life can't go on as if I had a "normal" child. I know that I need to suck it up and get over this, because I don't want to ruin the day for the rest of my children. I'm so sorry for this post, because I realize that I'm whining, but please remember that this is my journal of our journey and I hope and pray one day I will look back on this day and remember some of the good of the day instead of focusing on all the challenges.

I'm going to try to take Luke back at 5:30 for the parade and then Gordy will bring him back after that. Please pray that things will get better today and for the rest of this trip to be better, because while we've definitely had a few good days, to be honest most of our days have been full of lots of very challenging difficulties.

Love in Christ,
Luke's Mommy Sue

PS Being the positive person that I try to be, I hope and pray I can update you later with better news, sorry this was such a downer post, just keeping it real.

Wednesday, June 15, 2011

Hot, hot, hot it sure is hot here!

Man is it hot here! It's been in the high 90's, boy are we thankful for air conditioning in our trailer and van. The kids and I went to Shasta Caverns yesterday, it was nice and cool on the tour and so amazing. We had to climb 800 steps on the tour, therefore Gordy stayed back at the trailer with Luke. I hate the fact that Luke is unable to do all that we can, it just about breaks my heart to have to leave him behind.

We left Redding around noon today after our visit to Les Schwab Tire store to fix our trailer tire. Stopped near Sacramento to pick up some formula for Luke from a sweet family who had some extra formula they didn't need anymore. Even though it took a few hours of our day it was well worth it since it saved us hundreds of dollars. Thank you Julia and James.

We are on our way to Hensley Lake, which is about an hour from Yosemite. We plan to go spend the day at Yosemite tomorrow, which will be good since it will be about 75 degrees, 20 degrees cooler then where we are staying. We are so excited to see Yosemite park, we've heard it's beautiful there.

I hope to be able upload some pictures as soon as I can figure how. If you want to see some pictures or hear some more up to date news just ask to be my friend on face book, be sure to mention your a blog follower so I will accept you as a friend.

Luke is doing pretty good, though he had a rough night last night. We are hoping and praying he does better tonight.

Love in Christ,
Luke's Mommy Sue

Saturday, June 11, 2011

We're finally off, California here we come:-)

Just wanted to let y'all know we took off today on our vacation after Natalie & I walked the 12k Sound to the Narrows. I'm excited to say Natalie & I made great time, kept our pace around 13 minutes a mile. We finished in 1:44.25, I shaved off 35 minutes from the last time I did it many years ago.

We are going to Yreka, CA which is right over the Oregon, California border. We are staying in a Hotel tonight which is a good thing since we got such a late start, we won't be there until about midnight.

Luke is having a good day, we are hoping and praying he stays this way our entire trip.

Love in Christ,
Luke's Mommy Sue

PS A big shout out thank you to Lance for staying at our home, which he could be with us though:-)

Thursday, June 09, 2011

What a Crazy Roller Coaster Week Full of Some Huge Blessings and Challenges

This week has been very challenging to say the least. Since last Friday we've had our share of some huge challenges and lots amazing blessings also, here is our week in review:

Friday June 3rd
Blessing: It was exciting to hear Luke's rehab Dr. talk about how good Luke is looking and was sounding during his first Dr. appointment that day.
Challenge: It was discourging to hear Luke's Pediatrician talk about Luke's CO2 numbers being high once again and that Luke had lost a pound.
Blessing: Yoli and Juan volunteering to take Luke and Lily over night so that I could get a full night sleep.
Challenge: A call around 11 saying that Luke was doing horrible, his heart rate high, not breathing very good and on lots of extra oxygen. I had to go over there with some sudafed as I felt it could be allergy related.
The blessing: After some sudafed and some prayers Luke was doing well enough for Yoli to say yes keep him here and you go home and sleep. I did in fact get a full 9 hours of sleep that night, what a HUGE blessing.
Saturday June 4th
Blessing: Got some stuff done out in our trailer, preparing it for our vacation.
Challenge: While I was at the laundromat washing all our sleeping bags the tire of on our big blue van went flat, Gordy came to change it while I spent my time going back and forth between watching Luke and Lily in the van and making sure our sleeping bags finished drying.
Sunday June 5th
Challenge: Woke up to Luke being very stressed out after having a very rough night, needless to say I didn't get much sleep.
Blessing: After holding Luke for awhile he finally settled down and went to sleep. We both stayed home from church and even though we missed being there I realized that we needed that time to rest after our horrible night.
Challenge: Gordy spent part of the afternoon trying to find a decent price for two tires for our van, he finally found that Costco had the best price, but even then it was going to cost us about $435. He had to go to Costco to order and pay for them so that they would have them there for us this week.
Blessing: I was able to sit down and listen to Lily read some books to Luke and I and then spent some time reading out loud to the kids before they went to bed.
Monday June 6th
Blessing: Natalie and I went for a 7 1/2 mile walk timing ourselves to know how we are going to do this Saturday for the 12k Sound of Narrows walk we are doing. After our walk I was blessed by my friend Jeri who took me out for a belated Birthday lunch.
Challenge: After spending time on the phone with 3 different people we found out that even though we asked our medical supply company 3 weeks ago about getting a portable oxyginator for Luke, we are now to late to have one come in before we leave. They said to call a different company who quoted us the rental price of $100 a week for one, we said no that's just too much money for us so we are sticking to our oxygen tanks and praying that Luke will do great on our trip.
Tuesday June 7th
Challenge: I had to get up early to take our little blue van into the mechanic to get it fixed, because even though he said that the problem we were having would be a simple fix, both Josh and Gordy were unable to fix it. Our cost for that fix was close to $250.
Blessing: Natalie, Amy and Lance started preparing Luke's food formula while I ran down to Olympia to pick up some fresh milk for the formula.
Challenge: When I got home our trailer awning had broke off the trailer and was blown on top of it. I lost it and went crying into our home knowing that we had already spent major money this week on repairs.
Blessing: Josh and Natalie decided to go to the RV store, get the parts to fix it and fix it for us all before Gordy got home from work that day. It cost less than $20 since they did the labor for us.
Wednesday June 8th
Challenge: When I went down to the garage to get some eggs out of our extra fridge I noticed a little river of water going through our garage, upon investigation I found out that our freezer had been left open over night. Needless to say I spent close to an hour cleaning up that mess.
Blessing: I was able to spend the entire day at home without having to go anywhere so that I could get Lily, Isaiah, Ezekiel and myself packed for our trip.
Thursday June 9th
Blessing: Gordy and I woke up to realize that Luke had one of the best nights he's had in a long time.
Challenge: As Gordy was working on the trailer making sure everything was in good working order he realized that our air conditioner wasn't working.
Blessing: After taking time to have a family meeting where we spent some time praying and reading the Bible, Gordy went back out there and realized that he had just blown a fuse in our home, he fixed that and the air conditioner was in working order again.

I quite often think of myself as a pretty positive person, but this week has been a challenge at times to keep up a good attitude. I'm so glad that God has made the provision for us to go on this vacation, but I would be lying if I said getting everything together for this trip has been easy. Tomorrow I have to get Luke packed, the rest of the food together, finishing packing up the trailer, get a few errands ran and the list goes on. Let's just say that when we are finally on the road I'm sure our whole family will be breathing a huge sigh of relief.

Love in Christ,
Luke's Mommy Sue

Sunday, June 05, 2011

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

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

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

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

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

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

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

Love in Christ,
Luke's Mommy Sue

Thursday, June 02, 2011

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

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

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

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

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

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

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

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

Love in Christ,
Luke's Mommy Sue