Friday, March 23, 2007

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

Sunday, March 04, 2007

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.