Can Lying Actually Be A Good Thing???

Last week for the first time in his life, Mason lied to me. Blatant flat out LIE! So remember he is 9, but developmentally about 2 or 3.

Here's the story:

As you are aware, we are trying to potty train him. So he went to the bathroom to go pee, sat for a bit then got up. I asked him if he went pee, "No.", was his reply and sat down again. A minute or two later I heard him flush. So I asked him the same question, "Did you pee?". Turning his head, avoiding eye contact he replied, "Yes.". I asked him again, with the same reply. Hmmmm, rookie liars.... I don't allow him to flush unless he's added something to the clear toilet water. Flushing is his reward.

So I took him into his bedroom to get on a diaper. I readjusted my strategy. "Did you flush?". "Flush!", was his excited reply. There was a complete change in body language, so I continued with the same question from a few minutes ago. "Did you pee?". He sadly lowered his head and said, "No."

Caught him!!!! But I could hardly contain my laughter! And at the same time I was excited! Mason lied! Yes, I will have to figure out how to deal with a lying child with very limited comprehension. Yet at the same time, lying indicates progress in his development! Woo Hoo!! Lying requires imagination, so this incident clearly indicated that it's working!

Hopefully he doesn't do it again for a while. I'm not sure what to do with it now, he doesn't respond to the same type of discipline as typical kids. As with everything else with Mason, we'll figure it out as we go!

Back to School

Hello again

Just to give you a QUICK update on the boy.

Tomorrow is back to school! I don't know if I'm ready for it yet. ( I can't believe I wrote that and mean it!) This summer has been great. Usually during the last two weeks of August is when Mason starts loosing it and I need him to go back to school for me to stay sane! But now, with the big increase in respite funding that we got just over a year ago, I am finally catching up on rest. After 6 years of intense sleep deprivation, I have been able to sleep through the night for most of the last two years! Woo Hoo!! And with the respite, I get many breaks from the CONSTANT busyness of Mason as well as all the other issues.

Yet I am also ready to get back into a routine (eeeek! I actually mean that too!) For those of you who don't know me that well, ummmm, can you hear the laughter of those who do know me well? I tend to be a lot more spontaneous and random than structured. But it's something I've learned to deal with.

So I want to keep you up to snuff on the hallucinations and violent episodes I told you about recently. I have not seen any hallucinations in 3 weeks. Although Mason was at Grandpa and Grandma Martens this weekend, and Grandma described something that sounded like a very short version of his hallucinations.

We have also seen less of the violence. There was one episode last week where he threw over the dining chair and a coffee table. I put him into time out (he didn't want to cooperate, so when he's like that, I have to lay on top of him to keep him in time out. I know I have to follow through and make him stay in time out every time in order for that form of discipline to keep working, otherwise I'm hooped.) As soon as that timer went, he calmed down (he fought me the whole time in time out. Sometimes he sits nice but grumpy in time out). I had a little discussion with him regarding his behavior "Are you going to be a good boy now?". He then nods his head with his bottom lip sticking out a mile. He then tips his head towards me for a hug. I then wrap my arms around him for a moment before he gets going with that smile back on his face. I instruct him to pick up the chair and coffee table, and he does just as he is told. After that he is quite well behaved for hours or even the rest of the day. Amazing how consistent discipline works, even though it can be extremely difficult to follow through at times!! We spent 6 years of it not working at all, so using time out with Mason is extremely valuable. This particular day, he'd had a seizure just before the violent tantrum began, so I think that may have played into it as well. (there is a BIG difference between a regular and a violent tantrum)

We have an appointment with Mason's neurologist on Oct 15, sooner than originally planned. I think the plan was to go back next year sometime.

Well, I'm off to bed now. we have to get up EARLY tomorrow. No more sleeping in. All of us are night owls.

Thanks again for your prayers for us!!!

MARTENS FAMILY NEWS BREAK!!

Hello again

When I sent out the update a couple of days ago, I forgot to mention the Potty. So because this is one thing that some of you are very curious about, here's the story.

WARNING: Reader discretion is advised! Some of the content in the upcoming update may cause some readers to feel uncomfortable or grossed out! Parents who have gone through the process of potty training have already been desensitized and have nothing to worry about.

Well basically the Potty Training has come to a plateau. Mason will go pee on the potty when we ask him to, but won't initiate it. He is usually quite cooperative. Poop, on the other hand, is still happening in the Good Nights diaper. It wouldn't be so bad if it only happened once a day, or stayed solid.

MARTENS FAMILY NEWS BREAK!!

Twice now Mason has self-initiated going pee. :) :) :)

Today was the second time. I heard the bath water running. (He will sometimes have 2 or three a day, then other times will refuse to bath for days on end) Anyway, back to the bath running... I went to look, and there he was, standing buck naked with yellow water in the toilet!!! Isn't that exciting?? I sure was excited! Didn't think of taking a picture. Oh well, I guess you don't mind seeing that one..... SO, he knew he wanted to take a bath, and the routine is to go pee before a bath, and that is what he did! Had a bath. And went pee first.

Shirley

Medication and Psychosis

Hello dear friends and family!

Now that I look to what I've written, you better grab a cup of coffee while reading this!! It turned out a tad longer than I had planned.

So much has been going on with Mason, it's just incredible! But first I want to begin with a prayer request. I don't want to be too generic, because we really covet your prayers for us and with this you can pray specifically.

After being on the same 2 medications for many years, Mason has started having some rather disturbing side effects from one of them. They include normal tantrums turning into violent episodes. He looses control to where we can't do anything to stop him or calm him down. Throwing things (like furniture and rocks etc), kicking, screaming, hitting, etc. He is about 65 pounds and very strong. This also happens in the car where it feels like he'll kick my seat loose and smash the window out. He was doing this kind of thing up to several times a day. I went down a dose on the one medication when I read about it's possible side effects.

Another thing that started recently is that he is having episodes of hallucinations. Three of them happened about 6 am, lasting about half an hour or so. Among other things, it looked like he thought his bed was attacking him, screaming, look of intense fear in his eyes, etc. He also pushed me away, screaming etc. I must have been part of the hallucination as well. There was some other stuff going on as well, but you get the idea. The most recent episode happened in a fast food restaurant. It was much shorter, thankfully, although he spent the rest of the day VERY grumpy and difficult to manage with several violent outbursts.

The doctor is having him go down on that medication very quickly and up on the other one (which is a 'good mood' drug). So pray that this is the answer, otherwise I suspect it could be a change happening in his seizures, which could be much more difficult to control.
.........

Sooo, in spite of these difficulties, we have had a great summer! Mason continues to surprise us with new words, even putting 3 words together into a sentence!! " you... 'cared.... me" you scared me is a complete sentence!! isn't that great?!?! I believe he actually thinks in sentences like we do! But the abnormalities, seizures and delay from the seizures makes it hard for the whole system to work properly. And yet, we are seeing constant progress!! :) He understands so much!!! He catches on to stuff we had no clue he knew! Even using new words appropriately.

Oh and he likes to do everything himself! And everything he sees us do! Pour his own cereal and milk. A little messy at times! Toast into the toaster, and spreading his own jam. He now has figured out that he can go into the pantry and scrounge for snacks. ( He can't have learned that from me, could he??) He even mows the lawn by himself. Well, some of it. Let's just say it's a rather unique pattern, that I have to go and 'fix up' later!!

Something else that is absolutely fantastic is that he is understanding the concept of time!! "Later", "Tomorrow" , "In the morning", "Wednesday (or any other day of the week), are concepts he now understands. Although he doesn't know when Wednesday (or any other day of the week) is, he knows it's a different day than today. For example, if we would mention the word 'trailer' or 'Grandpa', he would totally flip out if we didn't go right then. Now, we can say, "we are going to the trailer tomorrow, or Thursday, or whatever" and he is satisfied! We don't have to be as cautious in what we say. We can reason with him a little more.

Mason is very much at the 2 - 3 year old age developmentally, although there seem to be things he does that are typical of 9 year olds. The bodily function noises continue to amuse him, as do other 9 year olds apparently! :)

He can maneuver his way around a computer better than some adults! I won't mention names here..... :) He was out at Starbucks with 2 dear friends of mine and his laptop. Apparently they tried figuring that thing out for 15 minutes and finally gave up and Mason just did this and that and had it going in no time. "Not only was I outsmarted by a 9 year old, I was outsmarted by a child with special needs!" was roughly what I was told by one of the women. Once again, I won't mention names here!!! LOL :)

We've been spending a lot of time down at our trailer ( in the US, south of Bellingham). Mason just LOVES it there. There's a 15 year old boy that looks after Mason for me down there, so I get respite breaks there as well. And Mason just loves him and has a great time. Mason has spent a lot of time in the pool there, pouring water from one container to another and lots of jumping in. What's been really neat this year is that I can actually lounge and relax while he plays on his own in the pool (with a life jacket on).

Because Mason wants to do everything we do, we purchased a Trail-a-bike. It's attached to our bike and he rides along with a huge smile on his face!!

In June, our friends, Dave and Wendy got married! Mason had the honor of being Dave's ring bearer! The rehearsal was quite interesting! We were in the little church practicing. As Mason was walking down the isle with the little white satin pillow tucked under his arm, the music started. And so did the boy! The other direction! He ran straight out of the church, out to my car, which was locked, but had a window open. He threw that nice pillow into the car and stood there, refusing to move. After bribing him with ice cream later and telling him Dave needed his help, Mason complied and went back in. As he adjusted to the environment and it's sounds, the real Mason showed up! He would stand on the stage up front with Dave and when he saw the main doors open he began his job as wedding planner! He crooked his finger and told the cute little flower girls, "Girls! Come!" in his usual boisterous voice. He bossed everyone coming down the isle in this manner, including the bride! LOL When everyone was up on stage his directing continued. If someone wasn't facing the pastor, he would make sure they were facing the right way. And so it went. It was a very entertaining evening. As a last minute addition, Wendy decided that Asia and Sydney would also be in the wedding as Mason's attendants. We just didn't know if he would walk down the isle on the day of the wedding, so the girls assisted him.

So on the day of the wedding Mason went all shy on us while walking down the isle! Walked super slow while looking at all the people with a little grin on his face. Good thing the girls were helping him move along! So up at the front he did some of his directing and motioning. When Wendy's daughter, Anna, appeared, Mason shouted out "Anna!!" Everyone broke out in laughter. Most or all of the guests knew or knew about Mason, so they understood.

Later during the message Mason stood up with his 'cell phone'. It's a demo, so it looks and feels real. He held it up as though he was taking pictures and video of the wedding. And seeing as we were in the second row, everyone could see it. Lots of smiles around the room!

Over all, he did remarkably well. You just never know with him, and Dave and Wendy were very well aware of that when they decided to have him in their wedding. It was a fantastic day!

Daryl has designed a new website for these updated. So if you want to check it out, it's www.masonmartens.com Sometimes I add stuff there that I don't send out in an email.

Other family stuff:

Asia is going to high school! Our baby is growing up! Grade 9 is just around the corner and she is very excited! Along with the regular academics, she has also signed up for the school sports package and Spanish! She was tired of French and wanted to try Japanese. We had a little chat with her and she came to see how much more useful Spanish would be for her. Our church sends out short term missions groups to Mexico quite often, and our friends are church planters in Spain. So those opportunities seem more realistic to her now. She is taking this year off electric guitar lessons, soccer, and cheerleading. So that will also mean less driving her around. She is also eagerly anticipating the activities of the high school youth group at church.

Sydney is going to grade 7. She had a big growth spurt this summer. 1 1/2 inches! I guess we have to do some serious back to school shopping for pants! She will also be getting glasses this next week. Her eyes have difficulties focusing and the options are glasses or vision therapy. The therapy is very expensive and kinda in the grey area of medicine. We have not yet found enough information to justify the cost. The glasses will just enlarge what she's reading so that it's easier on her eyes. Sydney is continuing with her piano lessons, but was very heartbroken in June when she could not perform at her recital due to a very large blister on the palm of her hand. :( She is very excited that she can join Vertical Edge, the youth group at church for grades 7 & 8.

Daryl is still at Linwood Homes doing a lot of computer stuff. He tells me all about it, but had a lot of technical words and descriptions that I try really hard to understand! I know he does their web designing and loves that. He does some on the side as well. www.3six3.com And then there is golfing. He shot a 78 this summer! There too, in describing the WHOLE round to me, he uses words like birdie and eagle and boggy. I know they mean one or two over or under par. You'd think I'd get it by now, after 22 years married to him!

I, Shirley, along with being mom and wife, am still very involved in the women's ministries at our church, the main focus being Oasis on Wednesday mornings. We'll be doing a Beth Moore Bible Study this fall as a whole group. I started already and am very excited for this fall! I have also been asked to be the main speaker/facilitator at a weekend retreat this October. I think it may also involve leading workshops, but the details will become clearer in the next while. I'm very excited and will get nervous yet! I'll be speaking four times on the Thanksgiving weekend. The retreat is for families of children with special needs, so of course near to my heart and experiences.

I can't leave out Princess and Bindi, our two cats. They like to eat and sleep and run around like crazy when we are trying to sleep. The girls just adore them, of course. Princess sleeps with Sydney and Bindi sleeps with Asia. It's really funny when Asia comes home from babysitting or has been away. She'll go up the stairs, and when Bindi notices, she zooms up the stairs ready to crawl into bed as well! Mason likes to chase the cats and pull their tails. Typical boy.

Daryl and I are on day 4 out of 5 days straight without any children. We've done lots of relaxing and reading. Much needed. We continue to be extremely thankful that we receive respite funding from the government to be able to get breaks from the constant needs Mason has. Even though he is doing extremely well developmentally, his challenges just change, and we still have to watch him very closely. With no concept of fear, he will still run out onto the road, or lay down in the middle of it, or do other random dangerous things.

I could go on with more stories, but your eyes may have glazed over by now. Daryl says I should perhaps do this in two parts so I don't bore people. So I put a picture in to divide it. LOL

Well by for now!

Open it Up!

It seems we always have an interesting story about our boy. This evening he was in bed (mommy and daddy's) playing on his laptop. We would check on him occasionally, but he likes being independent these days.

So I had been in there helping him on his computer, well actually, offering my help, but he didn't want it. He had put a DVD in, and normally we get it started for him because it's a bit complicated. Well I guess he's been watching us. He clicked on 'Finder', then 'applications', then opened the DVD player to watch his movie!

Totally amazed, I went into the living room to tell Daryl. Shortly after, we heard screaming. So I ran into the bedroom to find him holding an OPEN bottle of nail polish!! With a puddle of it on the keyboard of the computer!!!! Daryl rescued the laptop, while I attended to Mason, who had rubbed some of it into his eye. I washed him up good and it doesn't look like he got more than fumes into his eye to cause a bit of pain. I guess I'll find out in the morning if his eye is stuck shut or not.

Later I told Daryl what a pain it is sometimes that he knows how to open things up! (Thinking of the nail polish) This is just after I was in wonder and amazement at how he could open a complicated application program on the computer.

I guess certain parts of his brain are developing faster than the 'common sense' area!!!

Laundry Soap

(Picture @ right is taken by Mason himself. His eyes are two different colors)

Mason just turned 9, but is still at a 2-3 year old stage developmentally. So he loves to help, with just about everything. One of his favorites is helping with laundry.

Yesterday, I asked Asia to check on him. She called from the other room, “MOMMY!”. I ran and looked. And there he was, sitting on the floor, in front of the washer (front loader) and dryer, both doors wide open, trying madly to put the clothes back into the dryer. He also had the almost empty bottle of liquid detergent right there, with the lid off. He was helping Mommy with the laundry!!

Right now the washing machine is going for about the 7th time, trying to rinse out all the bubbles. There were a lot of them!! More work for mommy!

It made me think of a relationship with God. Very often we try to ‘help’ Him, not realizing our limitations. You see, Mason often helps me with loading and unloading the machines, but he is not ready for pouring the detergent. How often do we go ahead and “help” other people for God, yet end up making more work for Him in the end?

Bottom line: Help God where He is asking you to be. Don’t interfere, or try to initiate something on your own. If you wait for Him, He will guide you through whatever you are meant to do, with the best results! And keep quiet until God asks you to say something!

Allergy Testing Appointment

Hello everyone!

Quick version: the doctor appointment regarding allergy testing went very well today. Long talk with the dr, and did not need to be poked! :) His fevers are not an issue.

Now the interesting version!!! LOL

It all began yesterday when I talked to my supportive, Dear Husband on his way home from work. (we planned for him to come along to the appointment to help me and be supportive) It basically went like this:

Daryl, "Does Mason really have to go? You know I'm going to try talking you out of it during the appointment!!"

Shirley,"Should I call my friend to come along?"

Daryl, "We'll talk about it later."

So we got off the phone, and I immediately called my friend who had offered this help a month ago. Yes, she could come!! Last thing I needed was Daryl trying to derail what needed to be done!! It was GREAT to have her come along and help. Even though I (thankfully) didn't need help to hold him down to get pricked, she kept Mason busy so I could talk to the doctor without distractions. Which is huge.

So, because I know pretty much all the questions they're going to ask me, I had a two page brief history from birth to now written up. So when the doctor started to ask about Mason, I just handed it to him. It always makes the time and topics more efficient, and makes it clearer for the doctor to evaluate everything. I always do that when we see someone new, and have done a lot of documenting before surgery.

So regarding allergies: he does not have any allergies beyond the grass ones we saw in summer. Basically it is the doctor's opinion that the allergy medication is causing the seizure medications to metabolize slower in his liver thus increasing the dose in his blood system, as well as keeping it in his system longer, rather than having the liver eliminate it as efficiently. So I'm going to experiment a bit with giving him a lower dose and see if it will still help control the seizures while using the minimum amount of antihistamine. I will talk further with Dr Connolly at Children's Hospital in March.

Because Mason was not showing any signs of allergies, testing at this time is not necessary. We were in the appointment for 40 minutes with me asking a lot of questions, and I am very satisfied with the explanations.

Regarding the fevers that Mason has been having: Because they increase the seizures, I needed to check them out. This doctor ( a pediatrician/allergist) said that kids this age have an average of 1 or 2 fevers per month. That surprised me, because Mason is typically the kind of kid that gets sick once or twice per year!! But I think because he is now interacting with others a lot more (seizures are not putting him out of commission) he's catching the bugs that are going around! And the reason that he often does not get symptoms is that not all viruses have symptoms of runny nose etc!! So it's just a matter of getting the Advil into him quickly when the fever hits.

We also talked about a couple of other allergies: Mason (and Asia) used to be allergic to peanut butter - but NOT peanuts. The more natural the peanut butter, the bigger likely hood of breaking out into hives. The types with more additives like sugar, oils, etc (like Kraft or Jiff) would not cause a reaction. The doctor had never heard of this before. Both kids grew out of this allergy.

Then we talked about dairy. Mason can tolerate cheese, whipped cream, butter and a trace of icecream. But not milk and yogurt. (Mason used to not be able to tolerate any at all. Even the margarine in a cookie would cause severe runs out the back end) So we are going to try lactaid, to see if he is lactose intolerant as the doctor suspects. That would make life a lot easier. He's been on goat milk for 8 years, and we always have to check ingredients and watch out for everything.

Well there we go. That appointment went soooo much easier than I expected (especially after getting my supportive DH out of the way!!!!) Thank you to my friend M E for coming along on such short notice!! (Then we went for lunch mmmmm) Thank you to all of you who prayed. I got ALL the answers to my questions. I wish I could go for lunch with ALL of you!!

btw, Toilet Training is going EXTREMELY WELL!!!! That timer goes every 30 minutes and Mason jumps up and off he goes to the bathroom ('froom' as he says it). At home he's still in a diaper, but it stays dry nearly all the time!! :) :)

Well, TTFN!!

Shirley

Well, I have been thinking about sending out a prayer request email, but a major one is already turning into a praise!!!

We are in the midst of toilet training Mason! He will be 9 in March, so it's about time!!!!! Thankfully we've been on a funding program that provides diapers, and now Goodnights, wipes, and bed pads for us. And they get delivered to our door as well!! That's a lot of years of a costly necessity!

Mason's special ed teacher did some in May and June last year, and with the fall being so busy for especially special ed teachers, she started again on the first day back to school after Christmas. And he has been fully cooperating!! I started at home on Tuesday after school. The first four times I literally had to peel him off the floor kicking and screaming and hold him down on the toilet for 5 minutes. (he didn't produce anything either) I was EXHAUSTED!! I have a timer that beeps every half hour. On the fifth time, he heard the beeper, when and got it and went straight to the bathroom without a fuss!! So I knew it would be a BATTLE of the wills!! So those next few times, until bed time, he made a deposit into the toilet!! Of both varieties!!! ( I'm sparing you some of the actual details, but I'm sure you understand...)

So Wednesday he only fought me two times, then became very willing, and actually only made a deposit into his diaper only once all evening!! We were also calling a variety of people to celebrate with Mason over the phone. He really liked that!

Today, Thursday, there has been NO opposition at all!!! In fact, each time he sat down, he produced within the first half minute!!!! WOW AMAZING!!! (this is the most excited mom you will ever encounter regarding toilet training!!! He's a big boy, and eats a lot, and you can imagine the rest...)

This is something I really didn't think would ever happen. So I think this falls into the 'miracle' category.

Here is a prayer request, though. He has an appointment with the allergy specialist on Tuesday, Jan 15 for allergy testing. Daryl will come along, I will need the help. I don't think Mason will be very cooperative.... His blood test results came back with elevated white blood cell count, but he also had a cold that day, he coughed a few times (that's a bad cold for him...) So far we have no clue why he's getting the fevers, other than I think that's as bad as a cold gets for him...

Christmas holidays went well this year, unlike last year. Our funding increased for respite, so that really came into play. Last year I could hardly wait for school to be back on. Other than the average tantrums, this Christmas went really well.

He has an EEG and Neurologist appointment coming up in March. Regular check ups.

He continues to progress like crazy in speech and comprehension. Love it.

So thank you for your continued prayers and interest!

Shirley

Answers to Prayer

Thank you, Thank you, Thank you for your prayers!!!!!!!

First off, it turned out to be a 'virtual doctor appointment'. Mason wouldn't get out of the car, so the girls stayed there with him and I had the appointment on Mason's behalf. I really like our doctor, and he gives me a lot of latitude. So he wrote up what I needed etc. :)

So I decided to check out the small blood test clinic, in a strip mall so I could see in the window. There was nobody in there, so I quickly popped in to see how many bodies would be available to help. There were two technicians in there and were ready to do it. Then Mason refused to get out of the car again. We finally bribed him with an ice cream cone. (he says 'ice cream' really well!! and he can have a tiny amount of it : >) So he went in, and right away turned around and ran back to the car. I noticed someone standing nearby, but ignored her as I struggled with Mason, trying to get him back into the clinic. I then let Mason back into the car.

The person started talking to me... it was Nancy, who I've known for several years, but haven't seen in a long time!!! She offered to help!!!! Can you believe the timing?????? So we finally got Mason in and onto the bed. That was no small feat!!! Nancy held his legs down, I lay across his torso and held his left arm down. One technician held his right arm straight while the other drew blood. We could not have done it without Nancy!!! Part way through, Nancy told Mason is was almost done. He instantly stopped screaming and struggling! When they pulled out the needle, Mason said, "Thank you."!! We all laughed!! As we walked out, Mason called back, "Bye bye!" - happy as a lark.

And so off we went to get an ice cream. :) :)

So God provided help in the EXACT moment I needed it, AND I get to re-connect with an old friend! :)

Shirley

Good evening!! Merry Christmas season!!!

Well first, I'll tell you something exciting. A few weeks ago Mason started calling me "Mommy"!!! One of the most exciting milestones ever!! At least for me. He's been able to say "Mom" for a few years, but there's something about being called Mommy... ahhhhhhh.

A week later he started calling Daryl, "Daddy"!! Two syllable words have been extremely difficult for Mason, so this is quite huge.

Mason loves singing the christmas songs, like Rudolph the Red Nosed Reindeer, and Frosty the Snowman (loves watching that on TV!!) I have no clue what he understands about the real Christmas story of Jesus, but he says 'baby' when he sees the pictures or nativity scenes. He loves playing in the snow ... yes we've had it a few times now. And it's cold enough to have to wear a jacket, not just our cute puffy vests. Well, the girls are still wearing their vests, I can't convince them to dress warmer...

Thanks again for your prayers for my friend in Alababma, whose little boy has what Mason has. She was so grateful, and they've adjusted the medications as a result of the testing. Not sure yet how that has affected the seizures. Time will tell.

So here's a prayer request for Mason:

He has some unusual things going on that are affecting him and increasing his seizures a bit. I will emphasize 'a bit', in the big picture, it's hardly anything, BUT we don't want to start a trend of increases in seizures.

Unusual things:
1. In summer Mason had hayfever for the first time in his life. Because of the seizures and medication interactions, he's never been able to have cold or allergy medications. But the sneezing etc got so bad that it triggered a lot more seizures and I finally asked the pharmacist if there was anything we could do. So we gave him the newest one on the block. It worked on the hayfever, and brought his daily seizures back down to a few mild ones per day. :) The unusual thing here was that after the allergy season was over and I stopped giving him the allergy meds, the seizures went up again! So I have been trying it out this fall, and sure enough, when he is taking it daily, seizures are down.

2. Mason has been having random fevers without getting sick. They are very low temperatures, but what happens is that they trigger seizures, and if not dealt with they go into status, which means he continues to seizure without stopping. Tylenol does nothing, but children's liquid Advil works, thankfully. The next step is IV fluids in the hospital, not pleasant!!! But why does he keep getting these fevers? He had one a couple of weeks ago, without any symptoms of illness, and had another one today, and once again doesn't seem sick at all.

So I talked to our nurse at Childrens Hospital today. One of Mason's meds can lower his white blood cells, so he needs to get a blood test to check that. I'm going to need to take two or three people along with me to help hold him down for that. We also need to find out what's causing them. So far we're only treating the symptoms to keep the seizures at bay.

We are also going to look into allergy testing. We suspect he may have some underlying allergies that are triggering the seizures, even though he doesn't sneeze or sniffle or anything.

Time to pray for: Friday December 14, 3:30 pm for Dr appointment (family doctor) then the blood test some time after that. Then pray for God to give his wisdom, guidance, and knowledge to figure out what's going on, especially as Mason can't communicate any illness, or what he's feeling, with us.

FYI, he has several seizures a day (since a few months after surgery, two years ago), but still next to nothing compared to what it used to be like. He has been waking up at night again with a seizure, but falls back to sleep quickly. (unless he's on the allergy medication, then he sleeps through the night - no seizures to wake him up)

So there we go. It's actually kinda nice to not be asking for prayer nearly as often as I used to. So when you don't hear from me it's because Mason is doing so well, and I get caught up in the 'normal' of life as it is now!!

Well, that was longer than I'd planned to write. Thank you in advance for your thoughts and prayers. And we (the Martens') wish you a wonderful Christmas Season with your friends and families!!! I often think about how amazing it is that Jesus chose to leave his incredible home in Heaven to come to earth, to 'move into our neighborhood', to connect with us and invite us to choose to be His friend. That's what it's all about!!! And all we have to do is say, "yes to Jesus, I want to have a relationship with You!!" If you are reading this and have no clue what I'm talking about, just email me and I'd love to explain more!! He did not come to make another religion.....

Merry Christmas!!!

Shirley

Hello dear friends

This is not so much an update on Mason as a new connection for me. Recently I met a young mom from Alabama on Facebook who has a little boy with the same seizure disorder that Mason has. Kristy has a little boy, Jon Andrew, who is 2 1/2 with Infantile Spasms which is now progressing into Lennox Gastaut Syndrome. Exactly like Mason, only we are a number of years ahead of them. They are in a very difficult place right now, bleak, dark, seemingly no hope. We have had several opportunities to connect online, and have had a couple of long phone calls as well. I feel extremely privileged to be able to encourage her and give her hope, seeing as we are further down the SAME road. Having said that, this is the first time in 7 years that I have had someone to talk to whose child has the SAME condition. Shows how rare LGS is. I'm sure there are others around, I just haven't met them yet. Maybe I'm too shy.....

Anyway, we talked at length on the phone today and I told her how wonderful it's been to have so many people pray for Mason and us and really encouraged her to let those in her life know when and how to pray for them. I also asked her if I could pass it on to my Mason update people. So here is her email!!!

FYI: Mason has had several of these longer EEG's done and it's torture. This is what happens: we strap him down in a full body velcro kind of thing, shoulder to feet, I lay on him, trying to calm him down, as he is screaming the whole time, face beet red (one time he even had peticial hemorrhaging - tiny blood vessels bursting all over his face because he screamed so hard and so long). So for the next 1/2 hour this goes on while the EEG technician marks his head and then glues 25 - 30 leads (wires) onto his head. This happens with all EEG's. In the 24 hour ones ( or longer) he has to stay in bed for the whole time because they monitor him by video as well, and he can't be running around for that!! Never mind that he's hooked up to a head full of wires.

So knowing how hard this is, I would like to ask you to take a quick moment to pray for Jon Andrew. LGS is one of the most severe seizure disorders there are, so the road is long and hard ahead for them. Pray that God will give each of the doctors, nurses, technicians, and all others involved with this baby, HIS wisdom, HIS knowledge, HIS understanding, HIS direction, HIS peace to the family.

Thanks so much,
Shirley
by the way, Mason is doing great, other than having to go to school in his pajamas this morning, because he refused to get dressed. His routine was thrown off a bit this morning. Not that he cares what he wears to school! There was no way that I could convince him to change, and he's just to big for me to force him. He is exerting his desire to do what he wants to do. He is VERY aware that he has CHOICE!!!!



Dear friends and family and church family,
Just wanted to ask you to pray for Jon Andrew tomorrow (Tues until Wed) as he has a 24 hr EEG done. Pray that Jon Andrew would sleep while they are hooking up the EEG machine to his little head and that the doctor would have divine wisdom in next steps for him. Neurology is more of an artform than a science because of the brain's complexity. Jonathan and I have had lots of anxiety over all the seizures lately. We don't know what God's plan for Jon Andrew's life is, but we ask that you'd pray for our willingness to surrender our will to His.
Thanks
kristy

Looking Back...

I found a note I wrote on September 19, 2005 (10 days before surgery):

Tonic Clonic (grand mal) seizure at 7 am. I woke up to Mason's face buried in the blankets and teddy bears. I imagine his breathing was limited. When it was over, he fell asleep again.

Another TC at 8, then again, less severe, at 8:30. He slept until 10:30.

It's so hard to see this happen. The verse in my head lately is where the bible says that God will exceed my expectations. The Amplified version says something to the effect thatt He will do wha we even dare not ask.

While Mason slept, I thought this (didn't pray it, just thought it): Dare I ask for the full restoration of his ability to learn and develop?

"COME BOLDLY" were the words I heard in my head.

OK, so I did.

Then in the afternoon I drove past the church on McMillan. The words on the sign said, "I will sing to the Lord for He has head my cry."

Now, two years and one month later we are seeing exactly this happen. Back then it was an extremely scary thing to pray ... with confidence? I don't know how confident that prayer was because we had seen 5 years of no developmental growth at all. God continues to completely exceed our expectations, as we are seeing non-stop progress!! He has restored Mason's ability to learn!! Notice that the thought to ask for Mason's full restoration was not what I asked for (I don't know why!? I guess it wasn't what God wanted me to ask for!).

Two Year Update (since surgery)

Well, it’s been a VERY long time since I did an update on Mason and our family. I just checked … five months actually! First let me reassure you that the reason for the gap is because Mason is doing so well. But many of you keep asking when the next update is coming, so I’ll do a quickie timeline of the last few months:


May & June ~ Potty training. Well at school anyway. He was very cooperative with everyone at school. They set him in the bathroom every 10 minutes and he was dry most days. My plan of action was to let him get into the pattern of it at school, then carry it over to home. Yeah… the best laid plans… He decided that he would not do it at home. Plain and simple. And forcing him and trying to bribe him just didn’t work. So I really have no idea how it’s going to come about. They are going to start working on it at school again soon. So that is a huge prayer request: get this boy trained! I think once he decides to want to do it, it will be a matter of days. It’s just getting to that point! (we do get our good-nites and wipes supplied – even delivered to our door) (they’re really good at school with it, and I doubt that his friends know, so don’t tell any little kids!) So between all three kids, I’ve done 13+ years of diapers.
~ Respite Funding. It came through! It is so neat seeing how God will exceed our expectations! The funding came through without a glitch. Well, one glitch … we had to wait an extra month for the first payment. We get direct funding, then choose our respite caregivers. It was in the area of caregivers that God really exceeded our expectations. My first thought was am I going to find enough people to use all this money for? Well, YES! I had people that were available for overnights, some for day hours only, and even some teenagers down at the trailer here and there! I never went without help this summer when I needed it!! And Mason of course loved going with all these different people. He now has several extended families! He is also exposed to many new experiences that he otherwise would not have. The reason we need so much more respite right now is because he is going through a phase where he does not want to cooperate with me very often. We are seeing a LOT of 2/3 year old behaviors. And as I’ve put it before, it’s hard peeling an 8 year old off the road! 2 year olds are easy to pick up!

July & August ~ LOTS of time down at the trailer. (Whatcom Meadows ~ whatcommeadows.com) I had many opportunities to be down there with just the girls, with friends along, the girls and Mason, or with Daryl and the girls. Daryl went to a Mariners game in Seattle with the girls, we all went to Deception Pass beach many times, lots of camp fires, girls went biking, sleepovers with our campground neighbors (their kids are the same age as ours and our families get along well), shopping, walks, swimming, building projects (I built a deck onto the sunroom attached to the trailer this summer all by myself!! The kids helped…). ~ Because of the respite, Daryl and I got away for 5 nights in a row this summer!! First time in nearly 14 years! By the fourth day I was driving Daryl nuts. He kept telling me to relax and read a book. Well I’d done that! I am so not used to relaxing that many days in a row! I’ll try again sometime. Now I know what to expect, and I can plan better for it!
~ Camp Squeah ~ as all summers, the girls spend 5 days at bible camp. This year Asia also went to ‘What A Girl Wants’ 5-day camp at church. (not overnight) It was an amazing week focused on purity. They had a lot of fun, discussion groups, a fashion show and much more. They addressed many, many teen issues, purity, peers, health, modesty, etc. All from biblical perspective. She wants to go again next year! They have a younger aged group that Sydney wants to go to next year.
~ Daryl got lots of golfing in this summer, and I had a lot of unstructured time. I didn’t realize how close to being burnt out I was. The timing for the respite was perfect.

September & October ~ Back to school! Asia is in grade 8 and Sydney is in grade 6. Both in the same middle school. We are happy with the teachers they both have. Both girls are doing well in school and are involved in a few activities. Asia is in grade 8 band (drums) and Jazz band (electric guitar) as well as continuing guitar lessons. Sydney is in grade 6 band (drums) and continues taking piano lessons. Both girls do well in music (a talent they do NOT get from me!). Asia is playing house league soccer and started school cheerleading. Sydney’s new love is basketball, so she has joined Friday Night Basketball (Athletes in Action). And yes, they find time for homework, family, friends and relaxing! After many years of having to baby-sit Mason so I could get a break, they haven’t had to do that anymore. Instead, I find that they are starting to want to play with him! And he of course, adores his sisters. The respite had done more for us as a family than I thought it would.
~ Youth groups for the girls. Asia goes to Vertical Edge (grade 7 & 8) and occasionally plays electric guitar in the VE band. Last time she was going to add to that and sing as well, but she hurt her arm, so couldn’t play guitar, and wasn’t comfortable up front without the guitar. Next time. Sydney has started Jump 6, youth for grade sixes, something she’s waited for since Asia was in grade 6.
~ Mason is in grade 3 as well as the Special Ed class. The combination works so well for him and he loves school.
~ I am back at being involved in the women’s ministry at church. I am leading Oasis, the Wednesday morning group and really enjoying it a lot. It’s a lot of work, but the whole team of women is great! I am learning so much, being guided by our women’s pastor, and from so many others! Our theme this year is Pay it Forward – God’s Love, and we make a plan of action each week to reach out. We are definitely pushing past our comfort zones a bit!

Mason Progress Report ~ Seizures ~ In general, they’ve gradually been going up since last winter. Still very slight compared to what they were before surgery. We adjusted meds a bit, which seemed to help, although that brought on some Tourette Syndrome-like vocal tics, which sounded like grunts last spring. That wore off, but we still see some physical tics on occasion. One of his medications has that as a rare side effect. Mason will be having an EEG and Dr. appointment sometime around January, so we’ll ask more questions then if all continues as it is. Mason started sleeping through the night a year ago, but started waking at night with seizures again in the last few months. (I don’t keep close records like I used too, so I lose track of time/days/months) This summer Mason got grass allergies and hay fever. He’s never had that before, but they did a number on his seizures. He had a few more per day, and they were more intense. Because of his medications, we are not able to give him cough meds or allergy meds. But I finally called the pharmacist and begged for something. He was sneezing so hard, and his face was red and swollen. So she gave me something for him. It calmed the allergies as well as the seizures. He started sleeping through the night again! So that’s another area to explore. I think we may be looking into allergy testing and seeing if there is a link there. I’m continuing to give him the allergy meds even though that season is over. When I stop, I see an increase in seizures again and waking at night. So he may have something else going on.

~ Development ~ WOW! Amazing, Incredible!! It’s been just over two years since his surgery, and I think he has gained two years of development in that time!! We see changes every week, nearly every day. So I’ll try to list off some examples.
~ huge increase in vocabulary. ~ Mason is trying hard to say full words. Example: house (instead of hou__), cat (instead of ca_) etc. ~ He is very willing to repeat/practice words nearly all the time.
~ We have begun copying sentences in speech therapy. Example: when he and I were driving home the other day and he said: “dad … hockey”. So I had him repeat after me one word at a time: “dad … is … watching … hockey”. We must have done that at least 20 times! And there was noticeable improvement in his words and the speed in putting them together in that short time. Today, after lots of coaching, he said “I … want … cheese”. All by himself!! Lots of cheering! His speech therapist is loving working with him, kids with special needs that learn this fast are less than rare!
~ He understands what we’re saying even when we “talk around” the subject! ~ He can verbally spell his name sometimes. He’ll pretend to ‘write’ and say the letters of his name. (I remember when the girls were around 2 or 3 and they thought they were actually printing words!!)

















~ He really knows what he wants and can often, brokenly, communicate that to us. When he can’t communicate, or wants his own way, or wants something he can’t have, we see his very strong will! Thankfully time-out still works. ~ He wants to do everything we do! Pour milk, cereal, set the table, make toast. One morning he was determined to make his own toast. He put the bread in the toaster, pushed it down. Got a plate while he waited. Toast popped, he took it out and put it on the plate. I got the jam ready, but he scooped it and spread it on the toast. Putting the jam on took him about 5 minutes – he enjoyed doing this himself so much. He poured his own milk, with a bit of help from mommy. He then took his breakfast around the other side of the counter and ate it. Very proud of himself! We are seeing a lot of these kinds of things.

~ He acts out a lot with me, Mommy. Behaviors that I see all the time, he seldom does with other people. I get great reports from everyone who takes him for respite, and even school – although he’s acting out a smidge more at school than he used to. The word ‘no’ is being heard more there, now.
~ He had a Dr. appointment at Childrens Hospital in July. It was more of a ‘show and tell’ session than a doctor visit! From their reactions, I am certain that Mason is not typical of the results they see. I can only attribute this to the work God is doing. Your prayers, past, present, and future, are all a part of His work!
~ He goes to Church with us. That started a year and a half ago, and for the first while I spent the whole time with him in the preschool area with the toys. It felt so wonderful to attend church as a whole family! Even if I missed most of it. We had a young woman volunteer to assist him for a year which was wonderful! Mason loved it and really did well in following the routines in Kidstown and church. We’ve had some others start to help out there as well. And Mason loves going to church! Well, that seems like it was a bit longer than the ‘quickie timeline’, but it really only scratches the surface of the ongoing changes we see.

Left to right:
Asia, Shirley, Mason, Daryl, Sydney

Daily Miracles

Hello all!

The adventures carry on here. Mason continues to amaze us all the time.

This Mother’s Day weekend, Pastor Bev prayed for the moms in a beautiful long list of detail, including the moms of kids with special needs. She prayed about the ‘daily miracles’. A few of things impacted me as she prayed this. 1. Others have a window into what God is doing in my life as a mom to Mason. 2. Yes, there ARE daily miracles, even when they seem non-existent. 3. How often I overlook the daily miracles in the lives of our daughters in their own struggles, even if they aren’t as drastic as Mason’s.

So here are some of those daily miracles!
· In the last few weeks Mason has started ‘telling’ us about his day! For example: Auntie Kim played with him in the back yard last week. A couple of hours after she left, Mason looks at me and says, “Kim…….. pay……..box.” He was telling me that Kim had played with him in the sand box! WOW!!!
· He also gets it into his head that he wants to go to the trailer. He is starting to think abstract. Normally he says words that have to do with what he can see or touch – right now. Lately he just says “…ler” (trailer) out of the blue, which means he’s thinking about it without us saying anything. Saturday he wouldn’t get out of the car because he had decided he was going to the “….ler”.
· He is modifying his behavior a little more often when given the choice to obey Mommy, or go to his room for time-out. Putting him on the couch for time-out just doesn’t seem to be working any more. He does not like getting locked in his room for that minute or two!
· Words. He keeps getting more of them and is saying them better. After years of “yeah” or “yup”, in the last two days he has started saying “yes”. Sounding a bit like “yesh”. He wants to speak so much. He tries so hard and repeats us a lot. Most of the time if we tell him to say something he will, eagerly. Then when I want to show him off, he just clams up.
· He fights with the girls more. Yeah, fun….. I keep trying to tell the girls that this is what typical brothers do. They still get mad at him!! I changed vehicles in December. 5 year old Acura MDX - 7 SEATS!!!! Not as big as a van, I liked my Honda Accord because I could zip around. The Acura is actually shorter than my car was! So I can still make easy u-turns for all the times I pass the street I’m supposed to turn at! Now the girls sit in the third row most of the time. They arrive home without injuries, and Mommy is just that much more relaxed and in control of her emotions.
· School. Mason still loves it. I pop into his special ed class often, and he gives me a big hug, or just says “mom” half a dozen times. But he doesn’t cry, he knows he’ll see mommy soon again! The elementary school is doing a musical this week and all the kids are involved. Apparently Mason is actually doing quite well at the choreographed dance steps his grade 2 class is doing!!
· Chalk drawing on the sidewalk. He often takes that chalk and makes little strokes as he says, “M….A….O….N”. He practices ‘writing’ his name a lot at school. He tries to draw a ‘face’.
· Mason loves watching all kinds of TV shows and movies. He is repeating so much of what he hears on the TV, songs, actions. Same with games he plays on the computer. www.starfall.com is an amazing website for learning to read. Well the alphabet and numbers for Mason for now, but it has up to Grade 1 or 2 level stuff!!
· A miracle-to-be: potty training. So far not even a glimpse of it, but one day…………. Thankfully the ‘goodnights’ and other supplies are funded and get delivered.
· We’ve just had an increase in respite funding, and our social worker is looking for more funding for us. Recently we went for a little walk up the street. 6 houses or so. Then Mason decided he didn’t want to go back home with me. Once again the ‘crisis management hold’ was put into effect. But he still pulled up his feet, and I could carry him a few steps, then had to rest. Thankfully my neighbor offered to help and grabbed his legs and we carried him home that way…. Screaming …. Mason that is, although I was inside! But exhausting. Hopefully he becomes easier to manage as his weight and height increase.
· Mason LOVES going to church. He jumps, claps, and squeals during the up-beat music. Sometimes he even shouts “more!”. Enthusiasm without reserve! One time during a slower song of worship, I watched him as he slowly lifted his right hand. He was watching it go up. It looked as though his hand was being pulled up and Mason was just watching it. Was God drawing Mason to himself in that moment? Mason doesn’t have the intellect most of us have, but I believe that God does meet him and communicate with Mason in His own unique way. Child-like faith.
Well that should be all for tonight. There are, of course, many more stories, but you’ve had lots to read for today! Thanks, by the way. Your continued support is so appreciated!!

Shirley

New prayer request:
· Crystal – my second cousin, and family friend growing up – my age, single mom of four – just found out a few days ago that she has 6 tumors. 4 in her brain, 2 on her spinal cord, plus one cyst on her spinal cord. Surgery is coming up for the largest one golf ball size at the back of her brain. Here are her personal prayer requests:
· Prayer requests For now:
· The Doctors - well rested and confident
· the surgery - no cancellations or delays
· No complications - bleeding , infections, freak laryngoscope accidents
· Peace and assurance for me and My family
· That, above all, God will be glorified!

Previous prayer updates:
· 10 year old Cailyn continuing cancer treatments.
· Auntie Darlene. I had the awesome opportunity to fly to Winnipeg for a few days last weekend to see her. (thanks Daryl!!!) I got to spend time with her and Uncle Frank and their daughters. She is nearing the end. She wants to go home now. She is so ready to meet Jesus. Pray that it will come quickly and without any further pain. Thank-you Auntie Darlene for your endless encouragements to me.
…but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

Spring Break

Hello all!!!!
Well, we’re nearing the end of two weeks of Spring Break. School starts in less than 4 days. Mason needs it badly. We started off with the time change at the start of the break, and he has still not adjusted. I think back to school will help. He’s been quite uncooperative for the most part, much like the Christmas break. I think he’s really out of sync when he’s not in school. He’s had sleepovers and day visits at Grandpa and Grandma Martens, Auntie Kim & Uncle Tony, and some respite, so he’s had LOTS of fun, but he’s ready to get back into routine. So am I.
The girls just returned from nearly two weeks away. They were in Manitoba with Grandpa and Grandma Wiebe, Auntie Connie & Uncle Zac, Auntie Lisa & Uncle Kevin, and all their cousins. I asked them what their favorite part was and they rattled off ALL the names of the people they spent time with. They really got “familied up”!! G & G drove out and picked them up, then the girls flew home all by themselves for the first time ever. This will be a trip they will never forget!
This whole learning thing with Mason is just not ending!! He can put on his own shoes (mostly on the wrong foot!) and his own jacket. He puts it down on the floor, puts his hands into the sleeved up-side-down then flips it over his head and “tada” it’s on! Last week he went to play outside (one of few days that it didn’t rain on the break) and got out his little plastic T-ball set. He put that ball on the T, showed me where he threw the bat over the fence. (I had to go get it –hoping that Julius – the Doberman dog – wasn’t outside). Mason grabbed that bat and swung at the ball and hit it and it went flying 25 feet!! Now I’ll take you back to last summer – the last time he played with it. We kept showing him how to hit it properly, and he would practice swing with us many times. Then when he’d go to hit it, it was a vertical thump on top of the ball!!! Every single time!! So this was a HUGE surprise to me to see him hit it with great accuracy and hard – and properly!! Then he did it over and over! I was running to keep from being hit, that would have hurt!
His “printing” has improved a lot too. He used to scribble big wild scribbles all over the page. Now he takes his pencil and does short strokes like he’s trying to write! All the while he’s naming off various letters of the alphabet at random.
Mason is repeating words we say with great enthusiasm. He is also willing to be taught to repeat after us. It used to be so random, now it’s daily. We have also noticed that he is starting to become aware of his “inside voice”. He’s never had that before. In fact since surgery it’s gotten louder. And he has a “bold” voice to begin with. His little boy cousin in Winnipeg apparently has the same one!!
Here are some ideas to help you pray for us:
Ø Patience for Mommy and Daddy, as Mason tends to behave the worst with us. He gets very strong willed and says “ME” a lot, wanting to have his own way. Very much in that two year old stage, but 65 pounds. I took him to the pet store to get cat food yesterday. Usually he likes it, but this time I ended up having to peel him off the floor, while he’s screaming, grab him in the “crisis management hold”, and drag him out to the car while EVERYBODY is watching. Not that that bothers me too much. Thankfully autism is getting so well known, most people assume that is what he has once they clue in that this boy isn’t as typical as he looks! But I sure am grateful that we can use the handicap parking near the doors! This is all part of the developmental process, and he has to go through it – so we’re thankful for that, but his size and volume add a … let’s say … ‘challenge’?!?!
Ø Mason’s seizures have been increasing a bit over the last month. Normally they seem to happen mostly at night or upon waking. Lately we’ve been seeing more at supper time. They are all still VERY mild compared to before surgery, but we need to keep them at bay. We haven’t increased med in about 2 years, and he’s grown and gained weight in that time, so the concentration is getting lower in his body. So I hope it’s just a matter of having the meds catch up to his weight. We started a small increase this week, and may go up a bit more next week. The neurologist, via the nurse, said he is not on high doses now, so we have plenty of room to increase meds if needed.
PRAYER UPDATE
Daryl’s Aunt ~ I mentioned her in my last e-mail. She has had an immune disorder for many years, which had been in remission for quite some time, although it left her unable to hear. Well that returned a while back, her Cochlear hearing implant stopped functioning, then she got Bells Palsy (partial paralysis on one side of her face??), shingles in one eye (is now blind in that eye), then got an infection in the other eye (nearly unable to see). Last week the doctors informed them that she now has Leukemia. And there is no treatment for the type she has. She will be turning 60 this weekend. As I mentioned last time, she has been an amazing encourager to me over these years of what we’ve gone through with Mason. PLEASE, please take a moment to pray for her and her family. Husband, two daughters and their families. (grandchild #5 on the way)
My former neighbor’s daughter ~ from where I grew up ~ I mentioned her as well in my last e-mail ~ Little 10 year old Cailyn was diagnosed with cancer a few weeks ago. They have now determined that it’s stage 3 (out of 4). The doctors feel it’s still treatable, but very aggressive treatment and will go on for many months. They had to insert some kind of “line” to give her the chemo. Normally it’s not a difficult procedure, but they had trouble with her and it took 3 ½ hours. And Cailyn screamed that whole time. Because she had post-surgery trouble the week before, they couldn’t sedate her. She seems to have fallen into deep depression as well. Her Grandpa died of cancer last year. So she is a very scared little girl. This really hits me as Sydney is 10, and I can’t imagine her going through something like this.
So thank you for taking a minute or two to pray. I know there are so many people with big trials in their lives and much to deal with. I would also be honored to hear your prayer requests as you “send for help.” Psalm 121:1-3 says: “I look up to the mountains—does my help come from there? My help comes from the Lord, who made heaven and earth! He will not let you stumble; the one who watches over you will not slumber.” (NLT)
Shirley

Hello Everyone!

Well it's been nearly six months since I filled you in out the latest with Mason. He just continues to amaze us all the time. Comprehension levels keep going up and he's been putting two word phrases more frequently. So much of it is baby steps, but we notice every detail of progress. We just take for granted that the girls continue to progress that we don't notice the details as closely.

Christmas was a blast! NOT! The neat thing was that Mason understood what the gifts were about! In the past we would let him play with his gift beforehand so that he could get excited when he recognized it when he opened it. All the excitement though, increased his seizures a bit, and made him VERY incorrigible!!! Cranky, uncooperative - stressful. All of it was progress, but difficult. That first Monday back to school was Christmas Vacation to me!!! Since then he's been doing a lot better in the behavior department.

I wanted to tell you a bunch of 'Mason stories' today, but I'm kinda thick with a head cold. Got it from Mason! He's a kid that next-to-never gets sick. But last week he did catch a cold and on Tuesday afternoon the fever came on. Then it triggered a status (seizure that doesn't stop) seizure . The seizure ended up lasting 3 hours that night. In him it was mostly staring off with watery eyes and a bit of eye rolling. Status increases body temp, so they feed off each other and that's when we need extra intervention. (The last time he had a fever, nearly 2 years ago, we needed IV fluids to get the temp down when the Tylenol didn't help at all.) It was a hard decision to make, because Mason didn't look like he was having a seizure. I knew the signs, so I had to explain over and over to the ambulance guys, nurses and doctor. I felt so sad for him because he was scared of the ambulance, then of the hospital. Because of his greatly increased level of awareness since surgery, he now gets scared, knows he's scared, and was saying "cared" all the way in. :-( Yet it was really neat to see him able to express his emotions! Bittersweet.

This time Advil worked at the hospital - they give a higher dose than we normally do at home. 15-20 minutes later I saw the "seizure look" on his face just go away. I touched his forehead and it was cool. No IV was needed!!!! That's a whole event that takes 4 people to get done. I called the ambulance around 7:30 and I called Daryl to pick us up at 8:40. Fast!!! There were a couple of people who knew and prayed. :-) I kept sane!!! And Mason was pretty good after a while at the hospital.

What I didn't expect was tears near the surface (me). It was a big flashback to what life used to be like on a daily basis. Not the hospital part, but the ongoing crisis or near-crisis. Always being on edge, watching. Emotions having to be set aside regularly to be able to function to help my baby. How amazing the last year and a half has been to not be dealing with that all the time!!!!

We also now have the Special Needs Bus come to our door!!!! It picks up Mason and Sydney every morning, and drops them off!! I'd been trying to get that for over two years! It's very exciting for Mason and much less stressful for me!

Well, I should try to get to bed earlier than usual today. Get over this cold........


www.masonm.blogspot.com

I also want to say thanks for praying for the people in trouble that I e-mailed about recently.
- Malcolm, my cousin's husband is at home and on the mend. (serious flesh-eating disease) He is able to walk, and they are doing skin grafts to fix that leg which was eaten away. He has been quite overwhelmed that you ( and a couple of other prayer groups) would pray for him!
- Daryl's aunt had surgery for shingles in her eye, but is still at risk to get that in her other eye as well as several other medical conditions flaring up, keeping her in the hospital.

New prayer request:
- I just have to ask this because my heart breaks for this family. The mom was a very close friend to my sister, as well as being our neighbors, growing up - small community - they still keep in touch:

Cailyn just turned 10 years old on Feb. 24.
Friday, Feb 23 Cailyn had a severe stomach ache so they took her to the Hospital. It was discovered that there was a large mass in her abdomen. Surgery was done on Wednesday when the larger than a grapefruit tumor was removed as well as one ovary. The one ovary was completely infected and the tumor was sucked on to a number of different organs but had apparently not infected them. It was also discovered that the tumor had ruptured as well, spilling tumor cells all over the inside of her abdomen. This happened probably at the time of the severe stomach pain the previous Friday or possibly even at the onset of surgery. Not all of the pathology reports are back but yes, this is cancer. It is a relatively rare one called germ cell cancer. Generally this is a very treatable type of cancer although the size of the tumor, the rupturing of the tumor, and even what the final lab tests determine may make it a bigger challenge. Starting tomorrow (Monday) they will be doing tests to determine if the cancer is anywhere else particularly the lungs and bones as that is what this cancer sometimes goes. They meet with the doctors again on Friday and the plan is to start chemo on the following Monday. She will be staying in the hospital for the first 3 weeks of treatment to keep an eye on her as well as help manage pain and nausea.

As for how she is doing now, she did great following the surgery and there was talk of letting her out of the hospital for a few days. That changed on Saturday when she ended up with a high fever and vomiting. Saturday was a rough day for her.

The family will be getting a family picture taken this week. After that, sometime on the weekend, they plan on buzz cutting her hair. They were told that is a lot less traumatic than having big chunks of it fall off and that will probably happen within the first 2-3 days of the start of the chemo.

Shirley

2 Corinthians 1:3,4 Message: All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.

One year after Surgery!

September 15, 2006

Well, dear friends and family, and prayer partners, I think it’s about time to send out another update on Mason! It is now September and we are nearing a year since he had brain surgery. It has been the most amazing, miraculous year in our lives! A year ago at this time, Mason was wearing a helmet with a face guard day and night for the volume of seizures he was having as well as the severity of each one. He had also plateaued at a 12 - 18 month level developmentally for exactly 5 years.

Last year around this time I wrote:
“Ephesians 3:20, 21 has been popping into my head a lot lately: NIV20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! AmenAmplified Version:20 Now to Him Who, by (in consequence of) the [action of His] power that is at work within us, is able to [carry out His purpose and] do superabundantly, far over and above all that we [dare] ask or think [infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams]--21 To Him be glory in the church and in Christ Jesus throughout all generations forever and ever. Amen (so be it).

I’m crying right now as I read these words. Holy words, a gift from God. Did I really expect more than we could hope for? Yes I did. Did I expect as much as we have received? No, there is no possible way that we could have even begun to comprehend what we have seen and experienced this past year. infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams I need no other words than these, because I really cannot begin to explain this past year in a letter like this.

This summer we have seen Mason learn new things on a daily basis. New words, new concepts, comprehension, behaviors, emotions. He is developing in all areas of his life! He’s gone from “burping the alphabet” at the beginning of summer to being able to sing along to the alphabet song and actually singing some of the letters randomly throughout the song!!! (click on www.dropshots.com/shirleyann to watch the former ABC song!)

Mason answers questions knowingly much more often and so clearly. There are more and more words that he is able to say, even putting together the occasional 2 or 3 word sentence. He has also learned to count to 3 in the last two weeks! He recognizes a couple of letters, but seems to like R, and will point at it and say it at random.

Mason wants to do everything himself lately. “Me” is a word he is saying more often all the time. For example, he insists on poking the straw into his juice box himself. It’s a messy struggle, but he does it! Then he tries to wipe the spilled juice off his arm, while simultaneously spilling more. But he did it himself!! Pray for patience for me! One morning he wanted to help me make pancakes. I decided to let him stir, fully expecting to clean up a big mess later. Well, he did such a good job, stirring so gently, that no clean up was necessary! (click on www.dropshots.com/shirleyann to watch him)

We spent a lot of time at the trailer we own with my parents. It really was a lifesaver. Hotels, holidays, other people’s homes are just too difficult with him. He has further developed many 2-year-old behaviors and skills. Checking everything out, going where he wants, climbing, etc. These are all things he has always done, but we could always distract him - the good thing about a very short attention span. Well, now that he has a much longer attention span, he can also maintain his desire to attend to what he wants to do! And, he’s a big boy, get the drift? Well he loved going to the trailer and make “were” (his word for ‘fire’), tear and crumple up paper for the fire. He did so well there, lots of swimming and playing in the new sandbox grandpa built. He also watched an entire 33 minute kids video for the first time in his life two weeks ago! He’s never watched more than 30 seconds of TV unless we held him down on our laps for part of a “family movie”!

There is so much more to tell, and I will in upcoming updates. But for right now we would like to invite you to give glory with us to Him who did immeasurably more than all we asked or imagined, according to His power that is at work within us.

We want invite you to glorify God in our home with us as we have an Open House of Thankfulness and Celebration on Friday, September 29 from 6 to 9 pm. (One year and two days after surgery) Join us for the whole time, or drop in to say “hello” (one of Mason’s favorite words while on a walk!). We’ll have some snackies.

This invitaion is open to those of you receiving this e-mail as well as those you share it with. I know that there are so many of you that share Mason’s story with others, which is fabulous. (this is a really good excuse to meet Mason in person then!)

Hoping to see you at the open house!!

End of June

Hello

A few weeks ago, I let you know about our new adventures with “Jello Boy”. It’s been a very challenging time, but look! We’re surviving!!! The tough part has been remaining consistent in our follow through in what we say to Mason and expect of him. Gradually he is cooperating a little more again . . . some of the time. Here are a few big highlights in the last week or two:

• Tonight is the fourth evening in a row that Mason has gone to sleep on his own. Due to the anxiety he’s had since surgery, he would get quite hysterical if he was left alone in his room. We’ve been tucking him in and leaving the room with his door open. He can hear us, and we say something to him occasionally to reassure him we’re still here. Before surgery, I always felt that even if it had been a seizure/behavior day from ____, at least he went to bed so easy. I have now been reminded how that changes the whole dynamics of the rest of the evening!! It’s much more relaxing again.
  
• A few nights ago he slept through the WHOLE NIGHT!
  
• Last week Mason said his first 3 word sentence! Ma ree boon. (there were distinct thoughtful pauses between each word) Mommy read Goodnight Moon. His favorite book. He loves books!!!
  
• He has started speech therapy, and he is doing soooo well. His second time there, he would not get out of the car. Finally, I hauled him out, and when we got closer to the door, I told him to ring the doorbell, knowing that it would get him to the door. He pressed that button, yelled, ”Awdone! (all done)” and he zipped around and RAN to the car.”
  
• Sydney played “The Sound of Music” at her piano recital without a single mistake. She started taking lessons in February this year. She had to learn 10 different cords – including minors, and flats. She also won an award from her teacher for “Most Promising Student” That, together with a few other good things happening in school has been amazing in boosting her self esteem in recent months. It had been declining prior to that, due in part to a false perception of herself!
  
• Asia wrote and recorded a song and has a CD! Although getting her to practice her electric guitar is difficult at times, she too, has musical talent. Next year she also wants to take drum lessons. I think we may need to double up the door to the bonus room upstairs!!
  
  Only two weeks of school left. I am not as nervous about this summer as last year. Mason is much easier behavior-wise, and the worries over the seizures and all that entailed are gone. (helmet, injuries, seizures that would go on for hours, etc) It’s good for me to check back on the blog to last year to be reminded how good it is now. Having some mild seizures at night, occasionally extra mild ones during the day is a picnic.
  
  We co-own a trailer with my parents (Marge and Dick) an hour across the border since mid-last summer. It has become a favorite vacation hotspot for us. It’s an oldie, with a sunroom add-on, sitting on a large gravel lot, backing onto green-belt, in a complex with a great swimming pool. It’s easy to bring Mason there, he loves digging in the gravel, campfires, swimming (at least he did last year), and going for walks to the play ground. I find he gets bored in on place too long, so we’ll be sending a few days there, a few days home and go back and forth like that all summer. The girls love biking through the (security gated) campground, have made friends with a really nice Christian family two spots over, and we have the friends that “introduced” us to Whatcom Meadows last year, very nearby. Hotels are extremely difficult for Mason, so this is the best option for our family as a whole. The kids all love roasting hotdogs and marshmallows nearly every night we’re down here. I let Mason roast one (with my help sort of) last time. Flambé. When I wouldn’t let him do more, he went over to the table, took a couple of mm’s out of the bag and tossed them straight into the fire! Skip the stick!
  
  Well, it’s the end of Father’s Day. Daryl had a nice relaxing day today, well deserved!
  
  G’night

Still Moving Forward!

Well, things are continuing on the upswing in Mason’s life, in spite of a slight increase in seizures and I emphasize slight! They are still less intense than they have ever been even at their weakest.

Every week we see new things. In the last few weeks we have seen a dramatic increase in speech, in fact, non stop. Mason is trying to say everything we say, lots of repitition, and communication. Nearly all the words he says are partial most often saying the first part of the word. He has had one session with a speech therapist, and we’ll start up weekly once the paperwork for funding comes through.

Mason still wakes 1 – 3 times each night because of a seizure, althought very occasionally he will sleep until 4 or 6 am. Daryl and I take turns sleeping with him for the remainder of the night after he wakes up, so those are not restful nights sleeping with Mason. Before the surgery he never had a problem going to sleep on his own. But after surgery he became so much more aware that fear and anxiety set in. His imagination must also be increasing, because he seems to have a bad dream occasionally. He wakes up crying differently.

This week we have been catapulted into the “terrible twos”. We’ve been there a few times over the years, but Mason was always easy to distract. Now his general attention span is much longer, and so is his will to do as he pleases. Have you ever tried to BBQ jello? Yeah, doesn’t work, but that’s easier to do than to get Mason to cooperate with us now. A few months ago I mentioned that “time out” is the best thing that has happened here. This week that went out the window. At least two year olds are easy to pick up and handle. Not so with a seven year old weighing fifty-five pounds. Developmentally this is fantastic!! In the past it would last for a little while, then he’d regress again. This time I believe it will continue. . . . for a longgggggg time. We’ll make it through, knowing that good will come of it! J (God, You promised!!)

Mason is off nitrazepam!!!! Yep, he was irritable and moody coming off, but nothing we couldn’t handle. Thanks so very much for your prayers!!

E-mail is such a neat thing! I know we are covered by so many of you in prayer. And in reverse, we get the opportunity to pray for you. Many thanks go to God for you, and we feel privileged to pray for you when you send an e-mail, whether it’s a quick hello, or you too are in need of prayer.

Galatians 6:2 (NLT) Says:
Share each other's troubles and problems, and in this way obey the law of Christ.

So thank you for obeying the law of Christ

and giving us the opportunity to do so as well.

First EEG Post-Surgery

Well, after torturing the boy by keeping him up until nearly midnight and waking him at 5 am, Mason had his first post-surgery EEG. Sleep deprivation is necessary to make sure he falls asleep during the test. It can also trigger more seizures. The test involves wrapping Mason up tight in a sheet, then wrapping two large Velcro straps around him to keep him from getting away. The technician was (thankfully!) very quick in applying the 20+ leads (wires from the computer with little circles at the end stuck on with a special easy to remove glue) to his head. He cried most of the time, mostly from the restraint and not knowing what was going on. Otherwise it’s not painful or even very uncomfortable. Within 5 minutes of putting on the leads, he fell asleep. I didn’t notice any seizures. After 20 minutes he was woken followed by extremely bright flashing lights in his eyes . . . . poor little grumpy bear.

A few hours later we met with the doctor. She said that there was a lot of improvement on his EEG. On both sides of Mason’s brain. She also said that when they had suggested this surgery to us, they had hoped to stop only one type of seizure, the Tonic Drops. He was definitely exceeding their expectations. Because the seizures start on his left side, I had been hoping that there would be some improvement on the right side of his brain. So the improvement on both sides is really exciting! The doctor did say that she saw several seizures too small to be noticible aside from an EEG.

We have also started reducing one of his medications, Nitrazepam (same family as Valium). The last time he went off, he went into severe withdrawal, so you can really pray for this little boy over the next few weeks. None of the other meds have done this. His symptoms included being very cranky, screaming a lot for no reason, biting everything, including his toys, clothes, me and himself. I’m sure there were some others that I’ve forgotten, since it was nearly two years ago. I put him back on it at that time and have tried coming off more slowly a few times since then, but it’s been tough.

Update on Caden (I mentioned him last update). He is recovering at home getting over some side effects of the surgery – loss of speech for a few days and short-term paralysis on one side of his body. He is still having pain and unsteady walking. I’ll let you know more in the future. Thanks for your prayers for him! Please think of him as well when you pray for Mason. I just find that since we’ve gone through all this with Mason, my heart goes out to other families that have a child with such an uncontrollable seizure disorder. It’s so easy to take Asia and Sydney’s health and development for granted. Although I do that much less than I used to!

We have always kept within a couple of steps of Mason, but with his great increase in development and behavior, we are letting him wander and play farther from our reach. That seems to be resulting in more injuries. It’s actually a good thing, because it’s the normal development process. Active little boys get into stuff and get hurt. I’ve had a couple of boys from Mason’s grade one class over to play. Although I’ve been told how active they can be, I’m still not used to it when there is more than one extra boy here. Aside from minor bruises, Mason has had a couple of biggies. Last week he did something to his thumb and pulled his nail off ¾ of the way. We spent a couple of hours in emergency. It went quick, probably helped along by his nearly non-stop screaming, although the moment I told him we were going home, he stopped. The doctor had to remove the whole thing. I have no clue what he did – I don’t watch him as closely as I used to, there was no blood trail, and he can't tell me. ( I used to never take my eyes or ears off him) He spent a week with a huge bandage on his thumb holding it high, being extremely careful, but never cried after we left the hospital.

The other day we went to the playground near our house where Mason now enjoys playing on the equipment. Although we watch him, we can sit on the bench now without fear of him running away onto the road. Well, a couple pushing their cat in a cat-stroller distracted Daryl and me. Sydney wanted me to talk to them and ask about it and get a closer look. We were within 10 feet of Mason when he went head first off a 4 ½ foot high section, then smashed his chin against a metal part. He has a lot of bruising under his chin, bit a huge piece of the inside of his cheek and has a big blue bruise on the inside of his lip. There was a lot of blood, but thankfully mouth injuries stop bleeding pretty quickly. By the time we walked home (Mason in the stroller) he had stopped crying, and later that evening he ate an apple and some little hard candies!! Hasn’t cried since. Along with a high pain tolerance, he doesn’t seem to have the ongoing emotional response (self pity) to injuries like most of us. After all that, he had to be sleep deprived for the EEG the following day!

It’s tough seeing him go through these injuries, but there’s also a very positive side to it as he is becoming a little more like other boys! Hopefully he’s learning to be careful as well!

I am so very thankful that you all let me tell you about what is going on with Mason. (especially when I get long-winded like this) Although he still takes up much of our time, I am able to focus on Asia and Sydney a bit more these days. I am on a committee that is planning an eight-week session of a sibling support workshop here in Abbotsford. Personally I have no clue what to do, but am willing to learn! It’s with MCC supportive care services, the Fraser Valley Child Development Center, a couple of social workers, and parents. Our current focus is on fundraising to be able to start up in September ’06 and again in January ‘07. Professional counselors will be involved, which is where most of the costs are. This is something vitally important to families of children with Special Needs and/or Chronic conditions. The siblings are the ones most easily left out and will suffer for it (and grow from it) in the long term. Please pray that God will bless this endeavor greatly. That the finances will be poured in with ease, and the details will work out without a glitch. We have seen Him do mighty things already in the life of Mason and our family! He’s not finished yet!

Shirley