Purple Day

Pray for Jared

Currently, my friend's young adult son is in the hospital in Vancouver undergoing the same test as Mason recently did. He's already been in for a week without any seizures. Please, please, please, pray that he will have some! And pray that he will be able to have brain surgery for the seizures.

Thanks!

Mason's Purple Potty Birthday

You are invited to our Purple Potty Birthday Party!

Several things are happening at once, so we are combining it into ONE open house party.

~ Purple Day for Epilepsy Awareness (March 26)

~ Mason's 11th birthday (March 29)

~ Mason is toilet trained! (March 2010!)

~ God is GOOD! (All the Time!)

- We are officially celebrating something we never thought we would! Mason is a 'big boy' now! The Toilet Training Mission has been a success! We have had the help of many people, especially his teacher and TA's at school who started working on toilet training Mason long before I did.

You have followed our journey by reading (some?) of my emails and maybe even praying for us. So it's time to mark this huge milestone with us!

- We heard about Purple Day last year and helped with epilepsy awareness. So our party will have a purple theme.

here are a couple of facts:

~ Each day in Canada, an average of 42 people learn that they have epilepsy.

~ Each year an average of 15,500 people learn that they have epilepsy; 44% are diagnosed before the age of 5, 55% before the age of 10, 75-85% before age 18 and 1% of children will have recurrent seizures before age 14. 1.3% are over the age of 60. This means that about 60% of new patients are young children and senior citizens.

more: http://www.epilepsy.ca/eng/content/sheet.html

- Mason is having another birthday! 11 WOW. He does NOT need gifts, (unless you want to buy him a Wii system! LOL he loved the Mario 2010 ski game when he was in the hospital! I was amazed at how well he did!) .... but if you would like to bring him something, bring a birthday candle or any kind of candle. Purple if you can find it :) One of his favorite things is singing happy birthday to himself, with us as his accompanying choir and blowing out the candles.

WHO: Anyone who knows Mason or our family. Anyone who has been following his story, even if they don't know him yet. Those who don't know us, but may have Epilepsy or have a family member with Epilepsy. Or those who want to become more 'Aware' of Epilepsy.

WHEN: Friday, March 26, 6 to 9ish pm drop in any time stay for a bit or stay longer!

WHERE: #2 - 2525 Yale Court, Abbotsford, BC click here for map (we moved last summer)

There is some parking inside our townhouse complex, but you can also park on the street/cul de sac. You cannot park in the strip mall parking lot. You might be able to park in the Great West Fitness parking lot right across the street from our place. but there are not any 'no parking' signs. But that is 'park at your own risk ' - I don't know for sure if it's safe.

If our gate is locked, use the buzzer system under the roof next to the gate. Or call us and we can open it from our place: 604-854-1456 (gate is open until 7:15 or so)

WEAR PURPLE!!!

Shirley

(if you can, let me know if you're coming. Otherwise, just show up ;)

Bucketful of Miracles

There are so many cool things happening with Mason!

(but I'll first let you know that we have not heard anything else from the neurologist about the final results of the testing in the hospital)

In spite of an increase in seizures over the last few months, we are still seeing amazing progress in Mason. So I'll pull a few things out of the bucket for 'show and tell'.

We walked to auntie Kim and uncle Tony's last night. We didn't use his 'stroller;/wheelchair'. Mason didn't bolt off or anything. We walked along like a regular family!

Toileting...wow. Other than while he was in the hospital recently, I haven't put a diaper on Mason in quite a while! He's had a few solid accidents when he's been out in a different environment. We don't even have to remind him to go to the bathroom at all! Unless we're going out or something. Another huge bonus is that he is staying dry all night! Do you know how much less laundry I'm doing?!?! I did not expect him to be night trained at all, but apparently his night seizures do not affect his bladder control. =]

Mason will get his own bowl of cheerios. Gets his bowl, pours the cheerios, puts on a bit of brown sugar (sometimes an extra spoonful doesn't even make it to his bowl, going straight to his mouth instead), pours his goat milk, sits down and eats it.

Walks out to the bus all by himself! I watch out the window, but it's a short walk past our neighbours house, around the corner of the hedge and gets on. Learning a bit of independence.

His speech is continually improving and becoming slightly clearer. He loves singing. Current favorites: Walking along singing 'Away in a Manger' and sitting on the couch playing his guitar and singing along with 'Spongebob and Mason'.

Mason can put together 24 piece puzzles without a problem. He can also manage the remote control for TV all by himself.

There are many times that we are caught off guard by something Mason does or says. We are thoroughly enjoying these miracle bites =]

SpOnGeBoB and MaSoN

cousin-uncle Christian wrote this just for Mason!

Tartar sauce! (Mason's favorite Spongebob expression ;)

Olympic Moment

Sydney was watching the Olympic highlights last night when Alexandre Bilodeau's race was shown. She told me he was her favourite athlete. "Why?", I asked, expecting the answer to be that he won gold for Canada. " Because he's proud of his brother with special needs."

Way to go Sydney!

~Everlasting God ~ Almighty God~

First a disclaimer here. I want you to know that I have a few reasons for blogging here. One is to let you know what is going on with Mason for your awareness as well as to know how to pray for us. Another reason is that it is very therapeutic for me. And lastly, this is one way that I can chronicle parts of my life. So this post falls into the last category. I don't want to forget today. So you're not allowed to read this!! JUST KIDDING!

Here goes....

I love our pastorate group!!! We met today and God really used this evening to speak to me very deeply and personally. Most of the time I am easily able to contain my emotion until I'm in a private setting. Not tonight. I couldn't even sing the first song and had to leave the room during the second one. As we sang 'Everlasting God' these words pierced my heart: "strength will rise as we wait upon the Lord" after the song the question was posed: "what does this mean? to 'wait' " Hope was one of the replies. I realized over the last few weeks I had been placing my hope in brain surgery for Mason. And today's news from the doctor, that it is unlikely that Mason can have the brain surgery, was crushing. So God was redirecting my vision to Him in this song. Other words in this same song: " defender of the weak" reminded me not only of Mason's condition, but that I, too, am weak. God alone is "our hope, our strong deliverer".

God continued during the next song, 'Almighty God'. "life itself; your perfect plan--- it's all for Your Glory". Wow. God's perfect plan in Mason's life is to glorify God!! Not my perfect plan! Not what the world thinks his life should be.

Later on, we had a discussion on the life of Joseph and how his life was quite up and down; favored son who was sold into slavery by his brothers. Then had the good life in his masters home only to be sent to prison: not knowing when he would get out or be rescued. Yet through all of this, his faith and obedience and commitment to God was unsurpassed.

The other thing that crushed me today was coming to the realization that Mason is having a lot more seizures than I thought he was. The unlikelihood of him having surgery means the rest of his life will consist of trying various medications that may help here and there, but will never render him seizure free. Today I feel like I'm in that prison of the constant battle against the seizures, not knowing when we will be rescued. Yet the same God of Joseph is my God. My Rescuer, the Ancient of Days who has always been and will always be who knows and sees all. My Comforter, Almighty God.

So this is my prayer, that my life will reflect that my hope is only in God, no matter what my circumstance is, that I will always be faithful and obedient to Him. May the Lord help me. Everything is for His glory.

So, if you read all the way to the bottom here, I have a request of you: if you are going to pray for Mason and our family, put this at the top of the list: that our lives will reflect that our hope is only in God, no matter what our circumstance is, that we will always be faithful and obedient to Him.

Everything is for His glory.

And the doctor said...

We are home. :-) Mason is so happy!

Right now, Mason and Daddy have gone to McDonalds for lunch and then he's off to school.

The neurologist came by and said she had looked at yesterday's EEG a bit. She will be going over it all in detail over the next week and get back to us. But from what she had already seen, it does not look good for surgery. She saw spikes on the EEG on both frontal lobes. They generally do the surgery if they see seizure activity on one side only. Occasionally they may do it if it's 90% on one side. So please pray that there is still a chance for surgery as she and her colleagues review the data. If the answer is no we will continue a lifetime of trying different meds, none of which will eliminate the seizures.

Next step: After the results are determined, and the answer is no, he will start a new medication that is not available in Canada. It would be ordered from Australia.

Thanks again for your prayers and support! :-)

Nap time!!!

Going Home!!!

Mason's leads have been unhooked! We can see his fun green hair again! Mason and Asia are playing Wii while waiting for the neurologist to come by and then we're headed home.

He had a quite a few seizures during the night but didn't wake up until the big one at 6 am. Then another big one less than an hour later (different kind, too!). Then one more kind of seizure a while later. So we have all the seizures covered. :) What a great surprise for the EEG tech to come in around 9:15 and say we're going home! Thanks for all your prayers! And visits!

Well, time to pack...... :)

Bedtime day 1

The end of the first day.

Socially, Mason has had a blast! Lots of visitors! Mason has been very well entertained! :) Thank you, Thank you, Thank you!! He's had lots of fun playing Wii, games, and toys. ( Now he wants a Wii!! wanting something he doesn't have is also developmental progress that is fairly recent :)

Mason has refused to use the bed. We got him in for a few minutes, then I put up one of the sides and that was it! Gone. Back on the floor mat. So that's his bed and play area while we're here. He's been really cooperative for the most part. He's stayed on the mat really well. A few rough moments here and there. I've discovered that if there are plenty of people here, he is quite content.

Seizures: :( Haven't seen much. He's had about 6 or 7 tiny ones. I have even tried traumatizing him to trigger a seizures. Making him really upset and to cry hard usually triggers a strong seizure at home. Didn't work. Wait and pray. Waking at night or early morning (5 or 6 am) is our best chance for a bigger seizure.

The picture of Mason in his ready jammies was taken 15 minutes ago, getting ready to go to sleep. He just konked out. He falls asleep fast. It's bright as day in here, and will be all night.

I'll be here on the blog soon after I know anything more. Right now I have people lined up to come in until Tuesday afternoon. If the doctors decide they need more data, I'll post that here and then I will need people to come in Tuesday mid-afternoon, evening, late evening, someone overnight, Wednesday morning and Wednesday early afternoon.

my turn for a few zzzz's

difficult morning

The first half of the ride in went well. Asia and a friend came along. Half way in to Children's Mason wanted to go to sleep, which of course, he couldn't. We deprived him of sleep for two nights. A little while later he started the 'throw up cough'. I brought containers along. As soon as we got out of the car in the parking lot, he threw up. Being so over tired and getting upset at us for not letting him sleep caused it. That's happened before.

As soon as that was over, he felt great and went into the hospital quite happily. We went over to the play area and waited. After a while he suddenly decided he wanted to go home. After chasing him around (screaming) in the cafe and foyer of this big hospital, we finally got him settled and he dozed off. When we attempted to carry him in to his appointment(20 minutes late already) he woke up and started screaming again. We ended up strapping him into a wheelchair and racing to the EEG appointment, where he calmed right down. Spongebob helped! He let the technician prepare his head for the leads while in the wheelchair. But when it came time to glue, he freaked out. We got a hold of him and got him onto the table wrapped him in a sheet then a couple of layers of huge velcro straps. LOTS of crying and fighting. It took about an hour for the process.

Coming up to the room was not a problem and for the most part he has been playing well on a floor mat. He refuses to sit in the bed. He also keeps wanting to go home. There have been a few times that he has pulled at his 'pony tail' of wires. The little backpack that the wires are attached to gets him upset as well.

We've had various friends coming to help entertain Mason and bring toys to play with. This has been so wonderful! Mason really likes having visitors! And more are coming! :)

Asia will be staying overnight with me. What a helpful daughter she is!!!!

Mason has had 3 or 4 tiny seizures. So pray for some big ones!

Well, another visitor has arrived for Mason! Much excitement!

a little anxious

...just a little....

lightheaded, feeling my heart race a bit, very scattered mind ( I'm use to some scattered mind:)

This heaviness has been hanging over me all day. Other than a few bits of distraction, toys, friends, watching the Olympic torch go past our house.

I keep talking to Mason about what is going to happen, and he seems to be sort of ok with it. I ask: where are you going? "hospital', what will the doctor do? he puts his hand on his head, what will Mason do? "cry".

Barney theology song: "can't go over it, can't go under it, can't go around it, have to go through it!" That silly little song ran through my head a lot in the early seizure years. But it really rang true. Sometimes God takes us over, under, or around our difficult situations, but often we have to "go through it".

From Romans 8: "...You are controlled by the Spirit if you have the Spirit of God living in you. (And remember that those who do not have the Spirit of Christ living in them do not belong to him at all.) ... For his Spirit joins with our spirit to affirm that we are God’s children. And since we are his children, we are his heirs. In fact, together with Christ we are heirs of God’s glory. But if we are to share his glory, we must also share his suffering."

This is reassuring to me. For I do have His Spirit in me and if He will have me sharing his glory and suffering with him, that means He is WITH ME. :)

hmmmm feeling a little lighter.....

Well, I've been trying to prepare Mason for the hospital visit. Not going so well!! The last time we did the intensive monitoring was a few months before his Corpus Callosotomy a few years ago. At that time his comprehension was so limited that he didn't really know what was going on. This time he is very aware. Plus he's double the size and weight! And a strong fighter!

So I've been trying to describe what will be happening. Maybe if I talk about it enough he'll be ok with it. hahahahahaha

ok, back to reality..... he does understand what will be happening. The last EEG was in June. Although it was a 1 1/2 hour appointment and then went home.

Hey everyone.

Well, we're only a few days away from Mason going into the hospital. I'm starting to get nervous. He's gonna fight.

the date: Monday, Feb 8 9:30 am until Tuesday morning at the earliest. There is potential to stay up to five days, but he's having enough seizures that I think the dr's will have enough data in the first day/night.

This will probably be our most difficult hospital visit yet.

the needs:

1. PRAY pray that Mason will cooperate and not be too traumatized. Also pray that he will have plenty of seizures on monday and upon waking up on tuesday.

2. people to come out and help to entertain him. He will get bored of me very quickly. He's going to want to pull the leads off his head. He also has to stay in one spot. That will be difficult for such an active boy. I'm getting together his games, puzzles, toys, movies etc. So if you can help with this, I would really appreciate it. Let me know, then I can schedule so that people are dispersed.

time slots: Monday afternoon, evening, late evening, early Tuesday morning (7?) later Tuesday morning, Tuesday afternoon. If we have to stay longer, I will let you know. If the cost of gas is an issue, I'd like to help pay for that.

I will have internet access at the hospital and will keep the blog updated.

Can it be True?!?!

What would you do if something amazing happened that you never thought could happen? Something you never even dared to hope for? Can you think of something right now? We're in a small Bible study group with a couple of other families, kids and all, going through the book of Mark. Because we've read the stories many times over the years, they've lost some of their shock value. But while we were discussing these stories, adults and kids - and kids come up with some interesting concepts - I thought of the shock and surprise the people hanging around Jesus must have felt. Stories of a wild, crazy man who was so strong that he could break off the chains he was bound with, a woman suffering for years - having gone to every doctor, tried every treatment - and a little girl who died. With only a word, a command, a man instantly becomes sane, well. By only touching Jesus' clothes, a woman is healed of her illness. With a touch and a word, Jesus brings a little girl back to life.

Can you imagine the amazement these people experienced? Have you ever witnessed or heard first-hand of something almost to hard to believe? This is our God! He's unpredictable, does things His way, different each time, and I think he takes pleasure in surprising us. I know I have a blast surprising my kids with something I know they've longed for.

I am in the midst of feeling amazed, surprised and I really find it hard to believe. Mason is toilet trained! We don't have to remind him to go to the bathroom, he goes on his own. He hasn't had an accident in two or three weeks. And he's even dry overnight quite often!

How often I have prayed and thought, 'if only Mason would be potty trained, even for only the daytimes', but after changing his diapers for nearly 11 years, that seemed pretty impossible. You know, it's not that I didn't believe it could happen, rather it's that we don't always get what we want, and we usually don't know what we really need. Don't get me wrong, I have begged and cried for this to happen. How often did the woman who touched Jesus pray that God would heal her? 12 years worth.

Once again, God is, I believe, grinning from ear to ear watching us in our amazement. We're getting excited over poop in the toilet and giving 'poop gifts'! Hearing squeals of delight, "I peed!! WOO HOO!!"

So why does God heal and give us these amazing surprises? Want to know how I understand it? (then keep reading... :)

We live in a broken world. It wasn't always that way. God created the heavens and the earth and designed it for His greatest creation, mankind. The first couple messed it up by doing the one thing God told them not to do, resulting the introduction of sin into His perfect creation. This also broke the relationship God had with the first man and woman. So since that time, He has been in the process of restoration. He gives us opportunity to a restored relationship with Him, the Father, through Jesus. In His death and return to life, Jesus took onto himself the sin of the world, all of it for all time. As we acknowledge this and accept it, the Father removes our sin - our shortfall of being able to attain perfection and holiness, no matter how hard we try - and as a result, accepts us into a relationship with Him. He replaces what He took away - sin - with Himself, the Holy Spirit. Thus we get a taste of what a complete relationship will be when He returns and restores the earth at the end of time.

I believe surprises like healing the sick and toilet training kids with special needs give us a glimpse of what it will be like in that day. We were living in a constant state of changing diapers (not baby ones anymore) and cleaning up horrific messes. Our world is in a constant state of things being as they should not be. I now have a stack of 'good nites' I don't need. The miracles around us reassure us that soon the world will once again be as it was designed. Little reminders that God is at work.

We still see many miracles happening with Mason. God is constantly at work. He's always there with us in the worst of times. There's an awful lot that I just don't understand, but I trust Him. he loves my kids more that I ever could. I trust Him.

Go and read Mark 5. Imagine yourself in the place of the person healed, or in the place of the people watching it. Watch what Jesus is doing in the stories. Look for what He's doing today. He's doing something amazing!

Let your mouth drop in amazement.......

Mason Hospital update

Here's a little update on the up-coming hospital stay.

I received a phone call from our neurologist's nurse today. They have a little girl that lives up north that is doing very poorly, having drop seizures (like Mason used to have) and they would like to get her in as soon as possible for the Intensive monitoring because they want to do the Corpus Callosotomy on her asap. So Mason's appointment may be moved back by two weeks. We're fine with that, if it means that little girl can get in sooner. :)

There is a chance they can book both Mason and that little girl for Monday. I really have no preference, other than I've lined up a bunch of people to come in and visit Mason. But hopefully that could easily be changed. I should know in the next couple of days. I think I slightly lean to keeping the current date.

I asked a few questions about future dates:

The doctors will most likely be conferencing to discuss Mason at the end of February. If they decide he is a good candidate for the resection surgery (remove a portion of his brain where the seizures are originating), it would be about 6 - 8 weeks later. So that would put us in April for brain surgery.

I'm not sure just how I feel about the possibility of brain surgery again, mostly it doesn't feel real at all. Like looking at the calendar and seeing my girls' upcoming dentist appointment. But thinking of the possibility of no seizures, or even less seizures..... I can't get my head wrapped around that.

So I ask for your prayers for the upcoming appointment, whichever date it happens to be. Pray for the little girl that needs to get in urgently. Pray for peace for our family as we contemplate the surgery. It doesn't feel desperate like last time. Will that affect the decision?

Also pray for the start of Imagine...Respite. A new thing for families in the community that have a child with special needs or chronic health issues. there are many families that do not receive government funded respite services (so the parents get a break), so they will be able to drop off their kids (and siblings) for an evening once a month and get a break. The very first one is this Friday. If you know of any families that could use this, email me at imagine@northview.org for more information. :)

Mason News Flash

Ok, I've neglected updating the blog, but will do so SOON with all the details, or at least the important ones.....

Mason is very nearly toilet trained!!!!!!! I've been imagining changing diapers on a 17 year old and so on.

I have a request of you. (Jake, you can fly in from Spain, right? Mason would love to have you goofing off with him!)

On January 25, a Monday, Mason will be in at Children's Hospital for Intensive Monitoring. Hopefully only for a day, but could be longer. He will be hooked up to 25 - 30 leads (wires) on his head, plus he must stay in one area, like the bed, so that he remains within view of the video camera. I really really need help this time. he's getting bigger and can be strongwilled.....

I would like to 'invite' you to come in shifts to help entertain him. and give me a few minutes here and there to nap. I expect we'll be in overnight. The lights will remain on and bright all night. He needs to be watched closely the whole time.

So...... if you could come in at any point, say Monday or Tuesday, day or night, please let me know. Once you have emailed me with your availabilites, I will put together a schedule so that Mason is entertained a lot. Mommy gets boring very quickly. If you cannot afford the cost of the gas to go in, I am willing to help with that.

The purpose for this testing is to see if Mason is a candadate for brain surgery again... different kind than he already had. One step at a time......

Thanks!

Oh yeah, and pray for lots of seizures during the hospital stay. :) Once we're home, pray the opposite :)

Shirley

Jesus and Mason

One of the things that is hard to know is how Mason and God relate to each other. We don't know what Mason understands about Jesus: that he is God, came to earth as a teacher and redeemer of all those who accept him. Difficult to define in one sentence, but even more difficult to help someone like Mason understand. So the purpose of today's blog is to journal a few 'Jesus and Mason' moments that we have been privileged to see.

With Mason being able to attend church in the Imagine classroom, his awareness of God has increased. I really noticed this one time when I was reading a little book called "God Made Me" to him. Partway through, Mason says, "Church". He was making the connection of hearing about God at church and at home. Very exciting!

Last weekend at church, the girls helped out with Mason, but I also took him up to the Imagine classroom for a bit. Asia came up after a while and took Mason back down with her. I went looking for them soon after, expecting to find them on a couch in the foyer. I didn't see them, so I circled the church a few times. I finally found them back in the pew with Sydney. (Daryl was working in the power point booth) Communion had just finished. Later the girls told me that Mason took communion. He ate the cracker right away, but they got him to wait with the grape juice and drank it with everyone else. I pondered what this meant, not really knowing what to think of it. It turned out that before being served the elements, the girls asked Mason if he loved Jesus, "Yes", then they asked him if Jesus loved him, "Yes". Will Mason ever understand more than this? Who knows. Does he have a relationship with Jesus? Only the two of them will ever know what that exactly looks like, but from what I've seen, I'm sure he does.

The very first time that Mason raised his hands in worship was in church. I don't remember the song, but part-way through it his little hand slowly began to lift up. The way Mason watched his hand go up, it was almost as though God was helping him by pulling it up. Ever since then, Mason frequently lifts his hand or hands during songs that worship God, whether in church or driving in the car or wherever. One time as we were driving, the song Lifesong by Casting Crowns came on. (I have the lyrics here below) suddenly I saw this little hand lifted high in my rear-view mirror. It really hit me there that whatever Mason's life may be like or may seem to lack, his lifesong is reflecting God in his life.

Lifesong lyrics

Empty hands held high
Such small sacrifice
If not joined with my life
I sing in vain tonight

May the words I say
And the things I do
Make my lifesong sing
Bring a smile to You

Let my lifesong sing to You
Let my lifesong sing to You
I want to sign Your name to the end of this day
Knowing that my heart was true
Let my lifesong sing to You

Lord I give my life
A living sacrifice
To reach a world in need
To be Your hands and feet

So may the words I say
And the things I do
Make my lifesong sing
Bring a smile to You

Hallelujah
Hallelujah
Let my lifesong sing to You

Camp

OK, I'm a little slow on updating about Mason's week at camp. Well, I've been away. I'm home for a couple of days, then off again to the trailer. Anyway..... 

Mason's Week: Mason did really well at camp. I was expecting him to cry when he saw me. That didn't happen. Want to know the story of what he actually did when we arrived? I took Asia, Sydney and Grandma along with me. Sydney was actually glad Grandpa couldn't make it because she wanted Mason's attention. That girl missed her brother, big-time! If Grandpa would have been there, Mason would have ignored all the rest of us. So I walked into his cabin first, noticed some people sitting on the couches to the right, so I looked that way. The girls and Grandma were right behind me when I heard Mason's voice coming from the other direction. I turned toward his voice, held out my arms - ready for a big hug. He yelled out "MAMA" and ran into Grandma's arms! Right past me!!! Didn't even pause to look at me!! Big squishy hug. So you think that he would run straight into my arms after that, right? Not! He ran over to one of his councilors and was telling her "Mama! Mama!". Next he gave Sydney a big hug. Finally I told him to give me a hug. That's when he noticed me. 

I'll get over it...... 

Everyone there was sort of out-of-it-exhausted from a full week with kids, so I didn't get that much information. Paul filled me in on some stuff. Mason got homesick the last two days, asking for Mommy a lot. (not Mama .... he he he). He would not swim in the lake, but he loved throwing rocks in. Loved to feed the horses, but would not ride one. Slept well at night. They had a big food fight at dinner on the last day. Mason did not like that, so he and Paul went and did something else. Mason loved archery and kept asking for more of that. I don't know how he did, though, if he even got close to the target! Paul helped him hand-over-hand with it, though. 

He had a couple of bandages on his knees from falling down. :) I smile because it's nice to see him get owies from regular boy stuff, rather than seizures. :) And he let them put bandages on him! He won't let me!! Even the Sponge Bob ones! 

Mason came home with two bracelets he made. Obviously with a LOT of help. He really likes them and shows them to anyone who asks. 

Mommy and Daddy's Week: I actually did a lot better with the separation than I thought I would. I decided that I would not try to contact the camp until half-way through the week. I thought about him a lot. Daddy, on the other hand, was a little more anxious..... and He kept wanting me to email the camp and see how Mason was doing. Daryl would also start to get a sad look on his face and say, "I wonder how Mason is doing." and "Do you think he's ok?". I set him straight and told him not to talk that way. I didn't want to loose it. We did get an email part way through the week. It was quite generic, Mason was participating in activities and happy. But, as they told me, no news is good news! And that is the news we received all week! :) 

I had big plans to start packing. Didn't pack a single thing. I crashed. Did nothing. Napped. I just had no energy. I started getting some energy on day 4, and a little more on day 5. On day 6, Mason came home. I do feel better now for all that rest... and sleeping through the night for SIX days STRAIGHT! Woo Hoo!!!  

Asia and Sydney's Week: Asia has a summer job babysitting Monday to Friday, all day, for most of the summer. So she didn't really miss Mason. She's just busy and tired. A great experience for her! At the end of the second day, Sydney said that the house was so quiet, and she had nothing to do. I asked her if she missed Mason. Yup she did. Sydney mentioned that she missed Mason nearly every day. She, Mason and I went down the the trailer for the same day that Mason came home. Sydney got two straight days of playing with Mason. happy girl:) 

I have been very impressed with the the staff and volunteers at Zajac Ranch. They are very familiar with parents like me.... nervous first timers! And even better, they are really in tune with the kids. Working at a camp for kids with disabilities and chronic medical conditions would be a lot more intense than a regular camp. 

Mason smiles when we talk about camp. So hopefully he can go again next year!

Pray for Hope

I've been hearing the word 'hope' a little more often lately. I question some of the ways it's been tossed around. But then, what really is hope? The dictionary explains it as a feeling, a wish or desire. But how does one hope when those feelings cannot be mustered up? How does God grant hope? That, I believe, is a journey unique to each person and circumstance. I also believe that those answers can only be found in God's Word. Not by doing certain things, or trying to feel a certain way, or even some cute little story about it. I am thinking of three women right now that must find God's Hope in new or ongoing difficult journeys. I would like to take this opportunity to ask you to pray for them.

The first is my Mom. As you know her husband recently died. This is the second time for her, and I can't imagine what she's going through.  

The second is my sister's best friend, Shawna. I also babysat her many years ago. She is blogging an incredibly difficult journey. Her most recent blog on hope has been on my mind a lot. Click here: the road less travelled

The third one is my friend Kristy in Alabama. I have introduced you to her son, little Jon Andrew in Alabama. He has the same condition as Mason does. Here is a recent email from her: 

Hey All,

Wanted to ask that if you have a chance, pray that the Lord would protect Jon Andrew the week of Aug 3rd-7th.  We will be at Children's hospital in Birmingham doing a desensitization procedure with a medicine he has been allergic to in the past.  He will be in the ICU for about 2 days while beginning the process and then will move to a regular room.  We are praying that his body will be able to adapt to this medicine that has helped him in the past with seizures and behaviors.  Pray that he will not have any severe responses to trying the med again ie) shock, cardiac arrest, steven-johnson syndrome.  This is one of our last options before moving towards a brain surgery in the next year (we will only do this if absolutely necessary because my neuro isn't a big fan of the surgery, but we are running out of options).  

Another important part of this puzzle is that my doctors cannot find any allergy studies done in the world (literally) that have ever been done with this medicine (Banzel).  Lots of times they have done the desensitization process with penicilin, aspirin, a few other seizure meds, but not this particular med.  In other words, this is experimental with JA next week and very risky. Please pray for us.