Thursday, December 18, 2008

Psychiatrist Appointment and more

Mason has an appointment to see a psychiatrist at Children's for January 7. So that's good, nice and quick. Maybe we can get some more insight into what's going on with the boy. The Risperidone is helping, so that's good, but hopefully a short term fix as we deal with the long term behaviours. Behavioural issues will be something we will always have to deal with, as Mason does not have the capability to understand and reason as we do. With him getting bigger, they will be harder to manage. He is almost 10 and is taller and heavier than average. He is also very solid and strong.

Mason has slept straight through the night all the way until 7:30 am two days in a row!!!!! I actually woke just before my alarm today!! I don't think Mason has had two full nights in a row since the spring, therefore... I haven't either! Except when he's been away for an overnight respite.

Mason is loving the snow. Anyone want to hire him? He does "random " snow shoveling! Shovels the snow wherever he feels like it. This is at school yesterday.

He also LOVES "art"! btw, doesn't a Santa scarf go great with a Hawaiian shirt?

Saturday, December 13, 2008

Day 10

It's been ten days, now, since we started the new med. It's been very up and down. Over all, the daytime behaviours have settled. Our idea of "settled" is still stressful, but he cooperates more often :). Some days are better than others. We increased the dose on day 8.

On day 7, Mason had an "episode". He had been doing well all day and evening being the sweetest little boy. Suddenly, in a matter of a split second, his alter-ego appeared and he started screaming, freaking out, and thrashing the Christmas tree, stripping one side of it's ornaments. After a minute or two he calmed slightly and spent the next few minutes sobbing like crazy on the couch. It was heartbreaking to see him swing so wildly. I could not figure out a trigger, it was so random. I really don't know what to expect each day, or even each hour.

Mason has had a few good nights this week :) He even slept in until 9:30 today with waking only once at night for his usual seizures! Not that I slept in...I lay there waiting...

Mason had a blast this morning decorating a gingerbread house with his sisters. He even restrained himself from eating the candies until the decorating was finished!

Mason has been referred to a psychiatrist at Children's. We expect to see her soon in the new year.

Meds 101:
If you're not familiar with medications here's a little lesson!

- It usually takes 1 - 2 weeks for side effects to settle down.
- Some side effects go away
- Some side effects do not ever go away
- Some side effects linger, but are minimal

Honeymoon period: Medications are often effective for a period of time then become less effective - ranging from slight changes to not working at all. Sometimes they can even have the opposite effect that was intended. As a result, Mason has been on 12 - 15 different meds, up to 4 at one time. Thankfully Daryl has great prescription coverage at work! Most of the pills have been quite expensive.

Some medical conditions are resistant to any treatment. Lennox Gastaut Syndrome is such a condition. Most forms of Epilepsy respond positively to medication. There are a few types that do not and LGS is one of them.

Currently Mason is on one type of seizure medication. I don't think it is doing anything for him at all. In fact, as we went down on it, Mason had less seizures. This has happened with others as well. (all seizure meds have listed that they could actually increase seizures. If taken by someone without seizures, it could induce them)

With Epilepsy, everything is trial and error. We have always been told that we would try something and hopefully it would work. Even the most specialized specialists in neurology cannot predict what will happen in LGS.

Carrying on, one day at a time..... Shirley

Monday, December 08, 2008

Seizures

Mason had some unusual seizures at night. They scared him. :( Probably from the new meds. It usually takes at least a week or two for any side effects to subside, so we'll wait it out.

There could be another reason for the increase in seizures. Christmas! All the excitement of the lights and Santa could be doing it. Many kids with seizures have more at this time of year. They have to avoid the malls, lights, Christmas programs, etc. It never used to bother Mason because he was in such a fog all the time that he wasn't even aware. We had to open his gifts for him. he didn't have a clue what was going on. In the last couple of years that has changed! Now he has to open everyone's gifts!!

Sunday, December 07, 2008

testing the subscribe stuff

testing the subscribe stuff

Try subscribing at the left. I don't know if it works yet.

It works!! :) Cool!

Day 4 on New Meds

Today was the first day that Mason was home all day since starting Risperidone. He was pretty calm. He even watched a whole Rudolph movie in the morning!!! It's been at least half a year since he stayed in one spot that long. Lately he's done 20 minutes on a very good day, and those have been extremely rare.

It's still a little early to tell how well the medication is working. This could be the "honeymoon" period. We've had a lot of honeymoons over the years!! One time it was two whole weeks from a new med. He was seizure free for three weeks after brain surgery.

It was incredible to have a whole day without the screaming and the violence! :) :) :) We even decorated the Christmas tree today! Mason did something I have never seen him do before. He was able to hook the tiny wire hangers onto the plastic ornaments, and had the patience to do it, as well. He has very poor fine motor skills, so this is progress.

He had two of the stronger seizures this morning and had to lie down for about ten minutes after the second one. This is the first time a seizure has made him tired since he had surgery over three years ago. This new medication has the potential side effect of increased seizures. If it increases this much in the long run, that's just fine by me.

Friday, December 05, 2008

Day 2 on New Meds

So far it's difficult to tell exactly what the new medication, Risperidone, is doing. I think it may be taking the edge off Mason's impulses. They are still happening, but he's also been at school and away for respite tonight. He is still unusually hyper with a short attention span and extreme stubbornness. But we have seen no negative side effects so far!!!! :) :)

I spoke with a friend who is a nurse working with psychiatric patients. She is very familiar with this drug and was able to answer a lot of questions I had. Thanks ML!!!

Wednesday, December 03, 2008

Surrender

We have entered another difficult phase with Mason. He's been having an increase in difficult behaviours. Now remember, he is at a 2 - 3 year old age developmentally, but he is a big strong 9 year old boy. So that comes with some typical tantrums and boundary pushing. yet, with Mason, they accelerate to violent explosions instantly. That involves kicking, screaming, punching, biting and throwing furniture, including coffee tables, chairs and lamps. (The lamps actually still work! but we can't get the shades straight anymore.) He is also not sleeping most nights. It really escalated this past weekend and so I had a total meltdown on Monday. I talked to our social workers, a friend who has a child with a severe chronic condition as well, and our nurse at Children's hospital (she said it had been a long time since I cried on her). Mason seems to do much better when he is with other people though! That's something to be thankful for.

I can't say that we have figured out what's going on, but the nurse said they see this kind of thing happen a lot when the seizures come down. The seizures themselves act as a sedative, so now that Mason has less of them, he is more aware and alert, therefore wanting his own way a lot more. We see that in his increased comprehension and attempts at sentences. He is also on the lowest amount of medication he's been on.

So we are going to be trying out a new medication tonight. An anti-psychotic called Risperidone. It's a little bit scary. Although Mason has been on I don't know... fifteen different medications? This is a totally different category. He also has a tendency to paradoxical reactions to medications. One example is when we gave him Valium years ago to stop a seizure. I was told he would be very sleepy. He actually became so hyper that I couldn't even touch him for hours. The Risperidone is supposed to make him sleepy as well. It also has the potential to increase seizures, which I can easily live with right now. What it's supposed to do is settle him down and reduce his impulsiveness, as well as get him to sleep at night.

The other night he was awake a lot of the night. I slept in his bed with my arm across his chest and my leg across his legs to keep him down. I would doze off, and each time I woke, his eyes were open. I don't know if he was having seizures but most likely he was, as he does every night. I recalled how I used to hold Mason night after night in the rocking chair, seizure after seizure, singing "Jesus, All for Jesus" by Robin Mark. "All I am and have and ever hope to be". "All of my ambitions, hopes, and plans, I surrender these into Your hands". Many nights I couldn't even get past the first word of the song - "Jesus".

With that same song I now continue. "Jesus, all for Jesus". Once again we must surrender to Him our ambitions, hopes and plans. Jesus doesn't waste anything. :)

The Amazing Adventures of Mason

We are noticing that Mason is very observant and attempts to do whatever we do, or whatever he wants to do. Daryl and I were out last night and left Asia, who is 14, in charge of him. She told us this interesting story:
She had gone to the bathroom and when she got back, Mason had pulled up a stool to the kitchen gate and climbed over. He then pushed another stool up to the stove to get at the cupboard above to get the candle lighter. He then went and sat down at the kitchen counter with a cupcake. He put a candle into it and lit it. All this in a matter of a couple of minutes! Those brain synapses are working well!! Time to figure out a decent locking system in the kitchen that doesn't look funny!

Doors, doors, doors. All the doors on our main floor have keyed locks. Plus our deadbolts are keyed on both sides. He learned how to pick a bathroom lock when he was 2 1/2, so that's why the extra precautions. So we have a few tacks high up on the walls, way out of the reach of a 9 year old boy, to hook the keys on. Mason has figured out that if he throws something at it the key will fall off and BINGO, he can go into any room he wants and get into trouble. So it's back to the drawing board to find a new way to have the keys easily accessible, but not to the boy.

Another thing we'll have to be on the look out for is Mason climbing over the gate at the base of the stairs. I'm thinking barbed wire. Anyone have a better idea??

Friday, November 14, 2008

Unique Sleeping Position

This boy has some unique positions to sleep in!

Wednesday, November 12, 2008

20,000

What comes to mind we see the number 20,000? Dollars, a small city, the cost of some kind of new car, ...leagues under the sea, the cost of a house ... a very long time ago. None-the-less, it's a big number.

This week, this number reminds me of God's Faithfulness. I did something I have only ever done once before, many years ago: I estimated the number of seizures Mason has had in the past eight years. You may have guessed it by now... Twenty thousand. Those are only the ones we see. According to his EEG's, there are plenty happening in his brain that we don't see. It overwhelmed me the other day, how amazingly God has been there all along. Yes it's been tough, excruciating at times, but we, as a family, have not only survived, but, we are balanced and enjoy life! (Ok, not everyone thinks I'm balanced)

Sunday, November 09, 2008

What drives every parent to near insanity? : a child that does not stop saying "no". Well, right now Mason says "no" constantly. Only, he is not doing it out of defiance. He has developed an unusual side effect from his medication. Saying "no". It is a Tourette's Sydndrome type of tic, although Mason does not have TS.

So he says "no" every few seconds. The trouble is that most of the time I don't know if he is actually saying "no", or if it's the tic! A lot of confusion...

This also happened nearly two years ago when we went up on this medication. Only it was just a grunt. It took a couple of months to go away then. Hopefully this, too, is short term!

Wednesday, November 05, 2008

Doctors, Doctors, Doctors.

Well, the dust is settling after a number of issues arose for Mason. Here are the results of the doctors' appointments Mason had:
~ Family Doctor: to get a referral to the pediatrician.
~ Pediatrician: Saw him for the chronic diarrhea Mason has. We went for a blood test, which had me holding Mason on my lap, plus four technicians. One held his kicking legs, one held his fighting arm, another poked the needle in his blood vein and the last one blew bubbles! Not so fun. But he did leave with a wave and a smile and a bunch of stickers! We have not heard back about the test results, so that means they were negative for: Crohn's Disease, Celiac Disease (runs in my family), and other stuff. Basically we have no idea why it's going on. He is sensitive to certain foods, so it may be that there is something new he is sensitive to, and we just don't know what yet.
~ Neurologist: Mason was on two medications. We decided to go completely off one of them. Keppra was the one that was causing the hallucinations and aggressive and violent behavior. he has been off that med for a week, and the adverse side effects are now gone. :) He has also joined a study of medications with adverse side effects. Keppra with psychosis is one of the medications on their list. They took his DNA and are looking for genetic markers, that would show a predisposition to the drug, in order to create a national data base; something that is lacking in Canada.

Currently, Mason's seizures have increased in frequency and intensity. Once per night, plus 3 - 5 during the day. Most are a matter of seconds in length, others last anywhere from 15 seconds up to a minute. Right now, it's not a bad trade off for the negative side effects that are now gone!! He is a very happy boy again, with the frequent anger and aggression gone. Just the regular tantrums now!!!

Some really great stuff: Mason has been putting together four word sentences quite intentionally! There are short pauses between each word. " 't doing?" has become "what...are...you...doing?" . You can see his wheels turning as he does this. Some days he is a super jibber jabber -- non-stop chatterbox. Asking lots of questions and telling us everything he sees. Much of these are things he has done in the past, but now he says words slightly clearer, although a lot of it is still difficult to understand if you don't know him.

The thing that amazes me is that here we are,, three years after surgery, and Mason is still learning! I truly, am thankful for each day that I can say this!

Sunday, October 12, 2008

8 Years Later...

Today, October 12, marks 8 years since Mason was first admitted into the hospital and diagnosed with Infantile Spasms (later progressing to Lennox Gastaut Syndrome). The first few years I cried on this day because it was a painful memory. Today I cry for a different reason. God has been so faithful. He has been there all along, and even though we still have our struggles, I know He will continue to not let any of it be wasted.

Here a quick update on the boy. The diarrhea stopped for a couple of days, but returned soon after we arrived at the retreat this weekend. He has an appointment with a pediatrician on Tuesday to look into it. There was nothing that triggered it this time, that I know of anyway. It did make the retreat more difficult...

The weekend retreat was for families of kids with special needs. I have never felt so comfortable, as a family, in a group setting as I did this weekend! Acceptance, compassion, caring as well as 'not caring' when your child's behavior becomes not-so-nice. Like throwing a spoon across the dining room, tossing over chairs, screaming, etc. And that was only some of the stuff Mason did! I could just stand there and let him have his tantrum and nobody gave me funny looks.

Asia and Sydney both connected with other girls near their ages, and have formed friends for life, I'm sure. This was the first time Asia has met someone in her age group that has a sibling with special needs. And they go to the same youth group!!! Finally she has someone to identify with!

I was nervous Friday night, but not so bad Saturday morning when I spoke. And not at all on Sunday. I think I did alright in speaking and engaging everyone in sharing on different topics with questions I posed. It's always hard to tell, but some did tell me that there were a few things that they now view differently. :) There were many, many nods of agreement as I spoke. We identified with each other.

The most incredible moment for me was at breakfast on Saturday morning when I was talking to another mom. She had been feeding her 10 year old disabled son, but paused as she and I conversed. Suddenly her daughter, also 10, took the fork from her mom's hand and started feeding her brother, just picking up where her mom left off. I burst into tears. I have never seen another family operate the same way ours does. It's hard to explain, but families that have someone with a disability just operate differently. This weekend was such a bonding event like I have never experienced.

I could go on and on, but I promised a 'quick update'.

THANK YOU for your prayers this weekend and thank you in advance for your prayers this week.

Tuesday: Pediatrician
Wednesday: Neurologist

Off to bed, retreats = sleep that is not as good as at home!!

Sunday, October 05, 2008

Complications

Hey there everyone.

I just sent an email off to Mason's neurologist at Children's. So please ask God to give her His wisdom, His knowledge, His understanding as to what is going on with Mason.

As you know, he started hallucinating this summer. We've been messing around with his medications to see if they are causing this side effect. In doing this, his seizures have lessened (they'd been going up) and he is actually sleeping better at night because his night seizures are shorter and he settles quicker to go back to sleep. We are so happy for that!! :)

Although they have lessened in intensity, the hallucinations are still happening once each week or so. I'm starting to wonder if it's something else. He is also on day 5 of diarrhea, without being sick. (I really don't like doing laundry!!) It started after having some plums and grapes when he was with someone else. He has always been sensitive to grapes, but recovers quick. I didn't even think to tell the person he was with to avoid grapes. He's had food sensitivities ever since he was little. I also wonder what 8 years of heavy medications has done to his system.

Something's going on, but I don't know what. Usually I can kinda figure it out, but not this time.

Coming up:
We have an appointment with the neurologist on October 15.

I'm speaking (3 times) at the Family Support Network Retreat (for families with a member with a disability) next weekend, Oct 10 - 12. (Oct 12 is the 8th anniversary of Mason's diagnosis and first hospitalization) The kids are coming along. They have caregivers for the kids with special needs, and fun activities for the siblings as well!

I'm also taking a course that requires a lot of time.

Wednesday, September 17, 2008

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!

Monday, September 01, 2008

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!!!

Saturday, August 23, 2008

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

Friday, August 22, 2008

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!

Saturday, April 12, 2008

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!!!

Wednesday, April 09, 2008

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!

Tuesday, January 15, 2008

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

Saturday, January 12, 2008

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