Wednesday, November 12, 2014

Always

October 14th, 2014 was our 14th wedding anniversary...too bad there isn't a 14th month! :) We went "away" for Saturday and Sunday on a date weekend and it was amazing to spend uninterrupted time with my love for that long. I love that we are still in love.
The rest of October wasn't so great. Gavin got admitted to the hospital again...here he is in admitting, since it was planned. He's happy because, well, he's Steve Rogers turned Captain America. Nothing can get him down!
We got settle in his room with our usual routine and he was still happy. Excited to get his own Wii right away. Excited to be in our favorite wing of the hospital. And yes, we have a favorite wing and we go often enough to have a routine. It's sad, but it's also life. It can be cool if you look at it through a different set of lenses every once in awhile. 
Things took a turn for sour when Gavin realized he no longer has a PICC line and he needs an IV access. And they couldn't get an access without putting him through a lot of pain and tears first. We were sad and it triggered a masto reaction, but after they got the access, he got IV benadryl and...
things got better.
The next morning, we headed to Pre-Op because he was going into the OR for 4 procedures under general anesthesia. Again, happy before....
Miserable after--especially because he awoke with a tube down his nose that went into his stomach. :(
So miserable. Beyond it. I was going insane because I couldn't even sleep. I had to watch him to make sure he didn't yank it out in his sleep because he was c.r.a.z.y..
The next morning we got some preliminary results back--picture three results out of 50, but it was a start. The first two were huge. He is really anemic but most importantly, he now has a significant immune deficiency. So off to the PICU he went for IVIG (intravenous immunoglobulins). He was pre-medicated with Zofran, Benadryl and Tylenol for his mastocytosis, and he tolerated it well. As you can see, he even fell asleep. :)
And after it was done, they kept him under observation for a couple hours and determined he was fine to go home. We were beyond excited, and I promise that under all that sleepiness, he was too. 
Our biggest prayer beyond the really medically important ones was a practical one that had to do more with our son's happiness than anything else. He was in the hospital from Thursday to late Saturday night. That following Wednesday was our church's Hero-ween. They got to come dressed up as their favorite Superhero and do all kinds of fun things. Heroes Inc. is a Bible program at our church, and while it started in September, generally, Gavin has been too sick to attend. He REALLY wanted to start on the night they were celebrating Hero-Ween. So we all prayed for that, and the Lord said yes. He got to go and he did awesome!!!!!!

We joked around that IVIG is superhero juice because it gave him the energy of a superhero. No one at church could believe how great he looked compared to how they saw him last and knowing everything he went through. It was a TOTAL God thing. I got to be there taking pictures for the church so I got to watch him enjoy himself from a distance with his friends and it was great.
The next fun thing is that he actually got to go trick-or-treating. He really hadn't done a whole lot of anything for several months without having gotten sick after, and then he just didn't have the energy or ability to do anything after that. The Lord used IVIG to change that. Not only did he get to go to Hero-Ween but he also got to go trick or treating with some of our friends and us.
He got really tired towards the end but he did it, and we are so proud of him. Unfortunately, both the morning after Heroes and the morning after trick-or-treating, he got sick, but it was a start in the right direction and he enjoyed every minute of it. He even decided it was worth it. And me? Sometimes, I agree it is!

Chelsea was Katniss Everdeen from The Hunger Games Trilogy.
I did her "Katniss" Braid. :)
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November started in a beautiful way. We got to have a normal homeschool day--something we missed out on for most of October. It was bliss!

And that day ended like this.
Epic.

We are still waiting on A LOT of medical results and Gavin still has ongoing issues. So please keep him in your prayers. But if I've learned anything over the past 9 and a half years of his challenging yet amazing life, it's this: "there's ALWAYS something to be thankful for.

So:
For He is good, and His love endures forever.

Give Him Thanks, no matter what because all this? The hard, the yucky, the painful, the scary? He's got it ALL in His Hands and He WILL use it for good if you love Him and live for Him according to His purpose for your life. 

We do, so we will continue to give thanks, even when we're crying. Even when we're scared. Even when we're mad. He can take it. We can tell Him. And then He will comfort us and guide us and re-assure us that there's more to this life than all this. 

We were meant for something greater; in fact, we were made for another world. Someday, we'll be there and all will be made new, but until then, we press on with thanks. 

Always.

Thursday, October 9, 2014

Praising God in the Hard Times

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You've been challenging this year. Summer took us on a wild medical ride with our son and while it's slowing down, we know that it will pick up pace again in the coming weeks when he gets admitted to the hospital. 

But instead of focusing on ALL that is absolutely freaking me out, I'm going to focus on what I can give thanks for right now--the newest of news--Gavin's 5th wean off of steroids! It started like this:

He was super tired and slept all day for a week.
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And he needed this (IV fluids at home) and he wasn't too happy about it.
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But, Praise the Lord, now he looks like this:
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And today is Day 11 of NO oral steroids!!!!!!!!!!!! 

And I have to scream PRAISE GOD from the rooftops because we've been on this road with high-dose oral steroids for FOUR MONTHS! This is the 5th time we weaned off of it, and we've been pleading and begging and praying our hearts out for Gavin to be able to get off of them--and so it seems that the 5th's time a charm. Yay! :) 

We SO pray that it lasts!!

There's A LOT on the horizon in the way of invasive, painful or otherwise annoying medical testing because of all these new symptoms he has developed in the past 4 months. It starts next week and continues through the end of October.

I won't get into what it all is and how long the list of tests to do continues to grow or how much this pending stuff --what our sweet boy will endure and what the results may or may not be--is overwhelming me. I won't discuss how much it sometimes freaks me out if I think about it too long. I won't write about how said I am that he doesn't get to have a normal childhood, and I won't dwell on my question of how many things can one child have because I know other children have it worse and my heart breaks for every single one of them. It's tempting to give into self-pity, anxiety and even depression when the oceans of life rage but in Christ, we are to give thanks IN ALL circumstances. We are to always be FULL of JOY and we are to NEVER stop praying.

How is this possible in the midst of suffering? It requires a flip in perspective. It's a difficult flip to make but it's a necessary one and it involves listing what we are thankful for IN the hardships. I got some of the idea from One Thousand Gifts, a combination of Bible verses, the experiences and wisdom of others, and what the Holy Spirit has placed on my heart. This quote from One Thousand Gifts that I designed helps me a lot and it explains this concept in a simple yet profound way.
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So what I am going to get into is what I am thankful for IN all of this. While it's been hard and tears have been shed, it's also been good. The Lord has been with us every step of the way, and I trust that what He allows to happen will be used for our good according to His will that is at work within us. That alone is enough to be thankful for, but He has blessed us with more....

Here's my list for now intermixed with new ocean photos, because--well--it just isn't one of my blog posts if it doesn't have any ocean photos!
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1. Day 11 off of oral steroids---PRAISE GOD!!!!!!

2. His esophagus, stomach and intestines are showing signs of healing now that he is off of 4 months of high dose oral steroids....and no gastric emergency occurred while he was on them. What a huge blessing! 

3. His body is adjusting well to being off of steroids. His systemic disease, which includes his respiratory symptoms that made him start them in the first place, has remained under control. Praise The Lord!
First he slept all day and barely ate anything for about a week (normal side effects of going off); I was concerned but knew he needed to be allowed that time to let his body adjust. However, just yesterday was his first day of no nap--just a regular amount of sleep in one night--and he ate his first real meal! Yay! :)
While he hasn't had the energy to go do anything outside of our house, we are thrilled that he is well inside of it and that he hasn't needed to go back to the hospital or re-start the drug.
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4. He's been off of Reglan for over a month because it may be the cause of some of his new neuromuscular symptoms--while we still aren't sure, I have to acknowledge that we never thought he'd be able to function off of this med without getting very sick--he was never able to before! We prayed and The Lord graciously sustained him; it's the only logical answer to why this is working and we are SO thankful. 
While he needs more Zofran to prevent nausea and vomiting since stopping Reglan, he hasn't needed to exceed the maximum amount allowed per day, it has successfully prevented him from vomiting, and it isn't an FDA black box medicine like Reglan is. He also still can take ErYPed for his poor motility, and it helps some. For now, it's a better solution and we pray that he can stay off of Reglan forever.

5. While he has a tremor in his hand and fingers, it's only in his hand and fingers and it occurs with use, not at rest. And it doesn't occur all the time; it varies in intensity. This rules out a lot of serious neuromuscular conditions. Praise God! While it requires more effort, and he does get frustrated at times, he is still able to write and play Legos, and use both hands and fingers for fine motor activities. So while it's concerning, it isn't preventing him from doing what he ordinarily would be doing without it. That's a blessing.

6. While he has a muscle jerk in his right arm, it too is infrequent, and it's way more infrequent than the tremors. I'm so thankful it isn't as severe and that it doesn't require medication. We pray it never does. 

7. While he gets headaches and joint pain, they too are infrequent and not constant. It is treated with only Tylenol and that, so far, has been enough which proves it isn't severe. We are so thankful that it's easily treated and that it doesn't occur often--we also praise God that it can be used by our son as an indicator to rest.
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8. Gavin has a mostly great attitude throughout all of this. He doesn't sulk or pity himself--he doesn't dwell on what he's missing out on, in fact, not only does he not think about it, he doesn't seem to even care. He might get sad or mad for a couple minutes once in awhile but then he completely lets it go on his own and goes back to being perfectly content with what he can do. He can do very little outside of our house, yet again, he's perfectly content with it; the Lord is using it to humble and teach me in a ginormous way!

9. We may be sick but we get to spend a lot of time together. No explanation needed on how big of a blessing this is!

10. Even though he has a lot of testing to do, he has been blessed with great doctors, a great hospital that is capable of treating all of his rare and difficult to manage conditions and diseases, and a great insurance company and case manager that approves all non-contracted doctors for free because they know that it's what is best and safest for our son. I can't imagine his life without the meds he needs to live, without his doctors that understand his diseases and know how to treat them, and without a hospital that is a safe place for him to be. I can't imagine having an insurance company that doesn't allow him to have what he needs and I can't imagine this life without an insurance company with affordable rates. We praise The Lord for all these things and pray for those with this disease, and many other rare ones, who don't currently have these enormous blessings. 
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Another way that I cope when I am anxious, sad, overwhelmed, mad, etc. is with worship music. It's balm to my hurting soul. I have SO many favorites but here is a phrase and print from one of them:

"His Love Never Fails" by Jesus Culture
Your Love Never Fails
{This print and the above ocean photos are available in my Etsy Shop}

Having said all that, please pray for Gavin and for us in the coming weeks. And I hope that you can find things to be thankful for in the midst of whatever hardships or challenges you are facing today. If you'd like me to pray for you, leave a comment with your request.

I'll end with a picture of my two favorite girls. It has nothing to do with this post other than it being another thing I am thankful for: taking these two to the beach to take pictures so that I could give them photography lessons at one of my happy places at sunset...not alot is more fun than that :)
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Happy October to you all!

Tuesday, September 16, 2014

Ten on Ten-September

This might be my first "Ten on Ten" post and I am excited that I finally remembered on time! :)

School is going well...Chelsea loves her new two day a week homeschool co-op (her and I work at home on the other three days a week) and Gavin and I are loving our full-time homeschool week together--it's the perfect solution to all I was struggling with last year.
But it wouldn't be nearly as goofy and happy without Starbucks :) A good latte from Starbucks makes me sane when I feel like I've lost my marbles (which happens a lot).
Gavin's been having a hard time medically but in our house, we always find a reason to be silly. We will always find something to laugh at. It's one of our unsaid family rules; it's one of the main ways we cope.
Don't misunderstand--we have our sad and mad moments and we don't pretend the circumstances don't exist when we laugh--the Lord just gives the ability to find joy in any and every moment--we choose to always look for it and He always allows us to find it.

Gavin is still weaning off of high dose steroids (hence the puffy cheeks) and although he isn't doing horrible, he doesn't feel great either. Having it be 100 degrees in our normally 70 something degree beach town doesn't help.
He saw a neurologist last week and was diagnosed with Dysautonomia (autonomic nervous system dysfunction) and Peripheral Neuropathy (a dysfunction in the peripheral nervous system). I wasn't surprised because it's common in the disease he has {Systemic Mastocytosis} but I have mixed feelings. It's a good feeling to finally have a name to all these odd symptoms that he has had--and I predicted that these two conditions would be what was causing them. There's comfort in getting what you expect, however, I am always bummed when it's been confirmed that he has even more to deal with and more to endure through on a daily basis. 

This line from my favorite song is so true and it is always a source of comfort;
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the Lord has been filling our life with His grace in abounding ways. He's been sustaining Gavin in ways that we didn't think possible and for that, we are SO thankful. 
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His great love for us never fails. Even when I get mad at Him, He continues to answer our prayers, provide for our needs, and He even grants us some of the desires that we have in our hearts. He is the true definition of unconditional love and it's humbles my heart daily.
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Everywhere I look, I see evidence of His glory and goodness; whether it be in the giggle of my children or in an insanely beautiful sunset at the beach,
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in the companionship of a good friend or a great worship song that speaks directly to my heart.
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It's sometimes seen in the quiet snuggly moments I share with my family or in the vulnerable tenderhearted moments spent with my husband.
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Regardless of which moment reveals it to me, through it, I am always given the courage to carry on and the perseverance to push through life's obstacles with faith.
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He's always around and as long as I continue to seek Him, I will always find Him.
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 And oh how I praise Him for that!

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Tuesday, September 9, 2014

Vacation, Medical Stuff, and Back to School

We took a family vacation the last week of August to our favorite beach camping spot (A.K.A. "Our Happy Place").

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I haven't had the chance to upload and edit all of the photos yet but here's two as a preview...the one above and this one below. Even though Gavin struggled medically throughout the first half of the week and it was super hot, we managed to make the best of it and enjoy our time anyway. More photos to come later.

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It's that time of the year--back to school--and I've loved seeing all the back to school photos on various blogs and on my Facebook newsfeed. We homeschool at our kitchen table but since we usually eat on our coffee table in the family room, I took a little liberty to make this look a little school-like but maintained a little kitchen-like look at the same time since it is in the main part of our house.

This is the main wall:

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I designed all the prints myself (but they are not all in my Etsy Shop yet--though they will be soon). My kids did the boxed canvas paintings. I took the wave and sunset photos and the world and US maps are both vintage wrapping papers from Paper Source--they are SO cute, inexpensive, and totally worth the purchase. I think I'd have them on my wall even if we weren't homeschooling because they are that cool.
The wall to the left of the main wall is tiny, so it only holds the US Map and there is a sliding glass door to the left of that.

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This is the little tiny wall that's to the right of the main wall--the entry to the kitchen stands between it. So this is all that fits on it...this awesome framed chalkboard that I got half off at Michaels and above it, I put a beach watercolor painting that Chelsea made on our beach vacation. I intend to frame it and hang it above the chalkboard eventually. The Be a Light to the World is by the popular Katie Daisy from the Wheatfield on Etsy. I LOVE her prints...and this one is awesome sauce.

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Our rules this year come from a Charlotte Mason quote and I use this print that I designed (two different ones are in my Etsy shop) as a visual reminder of what they are.

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They are as follows:
1. I AM a child of God and I was fearfully and wonderfully made by Him for a purpose. 
2. I CAN do all things through Christ who gives me strength. 
3. I OUGHT to do my job so that I will obey God and my parents. 
4. I WILL keep watch over what I say and think and do what's right even if I don't want to. 

I love it, especially because my boy memorized it and whenever he is doing something that is the opposite of what this declares, (for example, he says he can't do something because it's too hard), all I do is point to the "I CAN" on the print that sits in front of where he sits at the table, (it's also framed on the wall), and he remembers that it stands for "I can do all things through Christ who gives me strength" and so then he says "Okaaaaay", and starts to do it. I love it!   

Here's some close-up photos of the art on the main wall:

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Above: The "Courage, Dear Heart" (far right) is a C.S. Lewis quote and we are reading his books this year--his biography and The Chronicles of Narnia. The print with a solid jagged yellow background to the left of the world map is a Corrie Ten Boom quote and we are reading her book, The Hiding Place, this year. Two of the three Bible verses (middle and bottom left) are from the Charlotte Mason declaration. The third Bible verse has been our theme verse from the beginning of homeschooling (top right).

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Gavin and Chelsea are being homeschooled differently this year, and so Gavin started first....one week before Chelsea did. So this was from Gavin's and my first day.

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Gavin and I are having a lot of fun together this year so far (even though it's been one week) as we've finally found our groove--what works and what doesn't--and I'm only sticking to what does. The best curriculum decision we ever made was to start using All About Reading. 

Since Gavin has dyslexia, saying that reading was a struggle would be a vast understatement. Before choosing to try All About Reading, there'd be more days where we both cried in frustration than happy ones like you see below--and ALL our days with this curriculum have been just that--happy! He's learning a lot while having fun and he's an official reader now that we are well into our level 3 book (we started it at the end of 2nd grade and just ordered level 4--so we are about half way through level 3 right now); I couldn't be more thrilled.

(the following our instagram photos)
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Gavin struggles in writing as much as he does in reading because he has dyslexia. So to take the pressure off and to change things up, I write a note for him on a dry erase board ever morning before we start school. My writing is in red and I leave a space in between each line where he copies my writing with a green dry erase marker--but not until after he reads it to me! So it's a good morning "warm-up" that attacks his two most challenging subjects--reading and writing--but in a way that he thinks is fun and sweet. He gets excited to see what I wrote to him and he works ever so diligently to copy it just so.


It's going really except for one thing--he's developed a hand and finger tremor and sometimes his arm muscles jerk away--we don't know what's causing it and he's scheduled to see a neurologist for an evaluation this month. As you can see below, his hand started shaking by the time he got to the last line but it wasn't as bad as it has been at other times. I still think he did a great job though! :)


As you can see, he is mostly happy about school....at least in this picture. :) Overall, he loves it, he loves being home and having me for a teacher--he flat out refuses to go to any school or co-op which is kind of good since he can't handle it medically anyway--but he gets tired easily, and has masto and neuro issues that creep up on him while he works and that frustrates him. Since he's still weaning off of steroids, he also gets tired easily. But we are re-starting IV fluid infusions on him this month in the hopes that it will help.


Chelsea had her first day of school yesterday; she is going to a homeschool program like she did in Kindergarden and 1st grade--she goes on Monday and Wednesdays and homeschools on Tuesdays, Thursdays, and Fridays. We homeschooled full time for 2nd-6th grades but now that she is a 7th grader, we decided it would be a good fit for both of us now, and I am happy to say it is. 
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She had a fabulous first day! :)

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While Gavin is starting IV infusions, has a big almost week long inpatient hospitalization coming up, a ton of doctors appointments and testing to go to, and I am still designing and doing photo shoots as a family and child photographer (Whew! That's alot!), I am optimistic that this school year will be the best one yet.

I love having one-on-one time with Gavin two days a week and I love how independent Chelsea is with her schoolwork when she is home now that I am not her only teacher and she is a big 7th grader.

It's a lot less stressful for me now that I don't have to split my chronically ill, always fatigued and ADD self so much between two really needy kids. As a result, Gavin now gets to have "the best of me" as a teacher like Chelsea got to when she was his age and he wasn't in school yet.

So "Cheers!" to a new school year, and may it always be this awesome! :)