Thursday, July 2, 2015

some exciting things to share

I haven't updated on here for a bit but have some exciting things to share.  Most of you probably know this since I wanted it to be a see for yourself thing before putting it on facebook or blogger. 

Benjamin has started walking with a "walking stick" meaning one crutch during the last 6 months.  He has been doing SO well.  He still stops when there is a bit of a hill or difference in the concrete etc.  At church he has come a long way.  Last Sunday I was having a meeting in the sanctuary and he was with me and kept walking up and down the aisles without me beside him.  He was doing so good.  We still have to be near him when he's tired since he has a habit of not paying attention or his legs not doing as well.  But he is doing amazing!  He even goes for walks around the block with us and walks with his walking stick the whole way.  Except for Sundays when he's usually pretty super tired- then we need to take a stroller or wheelchair along since when he's done he will just stand there and not move.

During the last few weeks of school he even surprised everyone by walking to the office with just the EA's finger on his back.  I got to see it and it was amazing!!!!  He doesn't do it at home too much- maybe since we don't have long hallways like at school.  Or maybe because there are some things he does at school that he doesn't do at home.  But that's ok.  He has come a long way.

Thursday, February 5, 2015

Dinner with a 4 year old

Devon loves to talk!  For those who only see him at church etc, you probably think he never talks as he's shy in public.  But at home, he sometimes doesn't stop talking.  We were having pancakes for dinner last night and he wouldn't stop talking.  So we asked him to stop talking and eat a couple times.  After a few times of saying that we said, "Devon, you need to finish your food."  And his reply- "But Kyle is distracting me!"

We all had a good chuckle at this as usually he is the last one done as he has SO much to tell us.

Sunday, January 11, 2015

Crest Lodge

In August my mom took our whole family to Crest Lodge.  It was great to spend a week as a family.

Biking down the hill there

Playing horseshoes


Trying out Devon's scooter

Reading on the swing

Minute to Win It Games




The beautiful lake

Catching Up





Last June we got a wheelchair accessible van.  It's so much easier getting Benjamin in and out of the van.  Although he wants to walk a lot now he still gets quite tired after long distances or stimulating events. 

Lately he has been learning how to walk on his own.  He will only do it at school but thankfully I was able to go and see it there one day.  He walks along the hallway wall at school with one hand on the wall and when he gets to the doorways just keeps on walking without holding onto anything.  He is scared to do it at home but it was so neat to see at school.

Monday, July 7, 2014

Seizure Study

Last week Wednesday Benjamin was admitted to BCCH for a seizure study.  Since he has been having new seizures since about April they decided to do this.  We got there around 12pm, went upstairs to 3R, figured out that we had to go downstairs to the EEG department where they glued leads on his head (yes, they used actual glue overtop of the paste).  We then went back up to 3R where Benjamin went into his bed where he'd spend his time until Friday.  That night we had to keep him up till midnight but he decided he wasn't going to sleep since he was so overtired.  He was awake until about 2am, dozed until 2:30 and then threw up from exhaustion.  He was gagging a lot and I figured he's keep throwing up so I asked for some gravol for him.  With that in his system he fell asleep finally at 3am.  5am came bright and early as that was when he had to get up for the day.  Gary came to the hospital from the hotel at about 9:30 and I went to the hotel to get some much needed sleep.  I slept for about 4 hours and then came back to the hospital.  During that time he had about 3 seizures and a bunch of episodes of grinding his teeth.  That afternoon the Fellow came to talk to us and said that he thought the seizures weren't actually seizures but that he would get the Doctor to doublecheck.   When the night shift nurse came on at 7pm we asked her to check if he had to be sleep deprived on the Thursday night as well.  She came back and said he could go to sleep at any time.  We were thankful for this since he looked SO exhausted.  So he fell asleep at 9pm.  I stayed at the hospital since the hotel we were put in seemed a little sketchy to me and I didn't want to sleep there alone.  The only thing about sleeping in the hospital is that the lights are fully on in the room since he is on video as well as on continuous EEG.  But I just put my cap over my eyes and fell asleep right away.  I slept till 6:30 at which point I gave Benjamin his feed since he had to be fully fed by 7am as after that he was only allowed clear fluids as the plan was for him to have an MRI at 1pm.  But Benjamin kept sleeping till about 8:30.  At around 10:30 that morning we found out that there was an emergency case that needed the MRI slot time at 1pm.  So we waited for the doctor to come talk to us.  The doctor came only a short time later and explain that the new "seizures" that we had been seeing weren't actually seizures.  It is dystonia which is an involuntary muscle disorder.  It is still neurological but doesn't cause brain damage if left untreated.  But then we found out that one of his medications that he just started on a month and a half ago can help with this.  Which explains why the last few weeks we hadn't been seeing many of these movements.  The EEG technician came and used some solvent to get the leads off, and then we gave Benjamin a bath and went home.  The plan is for Benjamin to still have an MRI in a few weeks but other than that there won't be much change.

We've had the question "Does he still have seizures then?"  The answer to this is yes, but they are under control with the first medication he is on.  He wasn't taken off that medication during the seizure study as we knew those ones were under control.  But these new movements look like seizures so the doctor wanted to make sure that they were.  And we found out that they are not. 


Tuesday, July 1, 2014

Variety Boat for Hope

The middle of June we had an amazing opportunity to go on the Variety Boat for Hope as a family.  We drove out to Vancouver and got on a yacht decorated as a pirate ship.  We then went out for an hour & a half.  Through out the boat ride there were 4 stations where we had to fend off pirate ships and their zodiacs with our water guns.  It was quite neat because we all had water guns and had to try get them wet and then they would give us loot.  Benjamin wasn't too sure, but Kyle & Devon absolutely loved it.  It was a cold, wet day so Benjamin might not have liked that.  We came back to the Vancouver yacht club and there was lunch for us as well as a bouncy castle and other things to do.  Since we were back late we didn't get to spend much time there as the places were closing when we were done our lunch.  But that was ok because the boat ride was the main highlight.  The kids came home with bags of loot- sunglasses, water bottles, candy, etc.  It was hard to take pictures since I didn't want the camera getting wet but I did get a few:)




Field Trip to Harrison

The beginning of June we went on a field trip to Harrison.  It was such a beautiful day. 

Benjamin had no interest in building sand castles.  Instead he tested the water and immediately scooted on his bum into it.  He wasn't very deep but he sure got wet!

Kyle loved building the sand castle!! 





Benjamin's friends helping him stand for the picture



Field Trip- Eco Dairy & Blue Heron Reserve


The end of May we went on a field trip to the Eco Dairy in Abbotsford and the Blue Heron Reserve.  Benjamin was quite happy to be on the bus with all the other kids.  Plus his EA, Mrs. Den Boer drives the bus and that was a highlight for him.  Kyle loved seeing all the cows and hearing about how they milk them.



Monday, April 21, 2014

Benjamin playing shuffleboard

Oma & Opa were over for the weekend and they stayed at our house from Sunday to Monday.  Our boys had so much fun with them.  We played shuffleboard with them and it was so funny to watch Benjamin.  Last night he kept crying when it wasn't his turn.  This morning was a little better since he wasn't as tired.  But every time someone came to stand by him he would point to the chair and tell them to sit on the chair.

video

Friday, March 28, 2014

A Day At Children's Hospital

Yesterday we had a full day at Children's Hospital.  We left here at 9am, got to Childrens at 10:25 as traffic was awesome.  It was good that we were there early as our first appointment had changed buildings due to construction.  So we had to go to information and then be shown to the new ophthalmology clinic.  We waited for a few minutes and then it was time for Kyle to see orthoptics.  They do all these tests with him to see how his vision is progressing.  We then went back to the waiting room and soon saw the resident.  He did a few things and then put drops in both boys' eyes. 

Back to the waiting room where we quickly ate some lunch while we waited.  I was in the middle of getting Benjamin's lunch ready when I saw a doctor that I had wanted to talk to in the hallway.  I caught him and asked him if he thought Benjamin could see color.  The EAs at school have been trying to teach Benjamin color and it just isn't working very well so they were wondering if he would be color blind or just isn't ready for colors yet.  His first question to me was, "why does he need to learn his colors."  I replied that we thought it was the next progression.  He then asked how Benjamin was with objects.  I replied that they were working with flashcards at school and that Benjamin was doing really well with them.  I explained how they would put a few on the table and then he had to find the car, the plane, etc.  He suggested that we start doing that at a distance.  He explained that you want him to be able to differentiate between items in the distance and that it was more important for him to know this than his colors.  It will engage him in the world more instead of just at a short distance.

Just done our lunch and back into the room we go.  We saw the resident again and to be honest he shouldn't be working with children.  Kyle's eyes were really sore from the drops and he didn't engage him; he just told him to look here, look there.  Kyle had a really hard time doing that since the resident was taking so long.  Then it was Benjamin's turn.  He really wouldn't cooperate so the resident had a hard time doing anything.   The resident then called the doctor. 

It was Kyle's turn again.  The doctor then did a bunch of tests with him and checked his eyesight.  His prescription is still the same but we found out that on the orthoptics testing he had done way worse than in December.  So Dr. Gardiner called the orthoptist and checked if she had done anything different than in December.  The orthoptist hadn't so they consulted together as to why his vision had gone downhill.  Dr. Gardiner then decided to check Kyle's glasses to see if they were the right prescription.  She found out that the stigmitism in his glasses was 90 degrees OFF.  That explains why his vision has gone downhill since December.  So we have to go back to Superstore to get them to correct this!

Then it was Benjamin's turn with Dr. Gardiner.  There was no change with him in his eyesight.  The ERG machine is now working again so they want to do a few tests on other children and make sure it's calibrated and then test Benjamin in the OR to do one last test on him to make sure one of the seizure medications he was on didn't affect his eyes.

Done with orthoptics and ophthalmology.  Off to the next appointment we go...

We got to our next appointment, neurology, at 1:30 which was our appointment time.  We waited in the waiting room for a while and then they called us to get Benjamin's height and weight.  He is now 113 in height and 19.1 kg in weight (around 42 lbs).  Then we were back to the waiting room where we waited until about 3pm to be called in.  We then saw the resident and showed him some videos of Benjamin having seizures.  He was concerned that Benjamin is having at least 2-3 clusters of seizures in a week again.  So we went over his medications and he consulted with the neurologist and they both came back and decided that Benjamin should come in for a couple nights for a video monitoring EEG.  They also want an MRI to see if anything has changed in his brain and see if they can pinpoint the seizures.  We are starting on a new medication in addition to the medication he is on to see if that can control the seizures.   But this medication is one of the ones with high probability of allergic reaction so we need to keep a close eye on him to make sure he doesn't develop any rashes or high fevers.  It will take 13 weeks to get to the full dosage.  We also talked a bit about brain surgery and we have to go through some testing to see where the seizures are stemming from and what part of the body that part of the brain controls and then weigh the risks and benefits. 

4:30pm and finally we're off to home.  We made a quick stop to pick up a coffee table I found on Craigslist that I'm going to paint and then continued on home.  By the time I had Devon picked up it was 6:15 and I was ready for bed.  We got all the boys to bed and they were asleep in no time.  I then had dinner and watched a video with Gary and was off to bed myself.

Now to do that for a day for the next 3 weeks.  I got asked if I would come back Monday for an appointment with another doctor but since I'm already going on Tuesday again I opted for another appointment.

Thursday, February 6, 2014

Yes, I'm back after taking a break from blogging for a bit.  I've had really low iron and it makes me super tired so I haven't really felt like blogging.  I've been trying a few different iron pills and eating iron rich food but so far I haven't found the right one.

Devon has been having health issues with his stomach since October.  In October we ended up in the ER because he was doubled over screaming in pain and I thought it might be appendicitis.  It wasn't thankfully but ever since then he's had stomach aches basically every single day for 1/2hr - 1 hour and has lost 6lbs since October and just isn't eating very well.

So a couple weeks ago I went to the dr with him and we got referred to a pediatrician.  In the meantime we got more bloodwork done and another x-ray done.  We got in within a week to the pediatrician.  We got the bloodwork back and went over it with the pediatrician.  Apparently Devon has low hemoglobin a in his blood which is quite rare and so it makes any testing for auto-immune diseases invalid.  So our blood testing for celiac did not work out.  So now he has to get a biopsy done at BC Childrens.  But in the meantime he put him on a laxative to help with his severe constipation.  We started on Friday and by Monday he didn't have stomach aches.  Also Monday he decided that he was going to wear underwear.  Well, he has been clean for 3 days now.  He did have an accident this morning but I think he was too busy and went to the bathroom too late.  Tonight he had a stomach ache again but it didn't last as long as before so I'm hoping it was just a one time thing.

I still can't believe he is toilet trained now.  We have been trying off and on for 1 1/2 years and it just never worked.  Now that his stomach aches are mostly gone he decided to just train himself.  Obviously it had something to do with him not being able to be toilet trained at first. I'm just happy that I only have 1 in diapers now:)

Sunday, October 6, 2013

September

Benjamin & Kyle started Grade 1.  It was a busy month for them as they go every day all day.  They are so tired by the end of the day! 

Benjamin is learning so much!! Over the summer, he learnt how to count to 10.  On the way home from our camping trip he started counting and kept going.  We were very surprised!  We play hide and seek with him a lot and always count to ten and apparently he picked that up.  He is learning his ABC's right now and knows most of the abc song.  He also picked up a lot of songs.  He started singing his bedtime prayer with us this summer.  One Sunday in September his Sunday School teacher came up to me and asked me if I had a list of songs that Benjamin knows since he was singing along to "Jesus loves me" in Sunday School.  I replied that I didn't even know he could sing along to that song.  Over the next couple weeks I heard him sing "My God is So Big, So Strong & So Mighty", "There is a Name I Love to Hear", "I'm in the Lord's Army."  We are trying to teach him Praise God From Whom All Blessing Flow Right now.  A lot of the other songs he learnt just from watching his Sunday School Songs video from the Cedarmont Kids.  It would be nice to have a video like that with some Psalters and well known hymns. 

Kyle is learning so much in Grade 1.  He learnt about patterns one week and noticed one Sunday that my skirt had a pattern on it.  He has also been learning a lot of Bible Stories and is starting to answer more questions when we read the Bible at home.  He loves math and I found a few books for him for sale on Facebook which I picked up which he loves to work on after school.  He is so tired when he comes home from school but yet he loves to sit down with those books and learn more.  He loves to memorize Psalters and does really good with that.  The Bible verses he does good with but some of them are hard for him to remember and others he knows within a day or two.



August- Alice Lake

In August we went to Alice Lake for 9 days.  We did tenting this time as we wanted to try it out with the kids.  Brave of us since we were going for 9 days but it all worked out.  It is much easier with a trailer but tenting did work.  It was nice since Benjamin had gotten off the bi-pap earlier in the month so we didn't have to set that up. 

A lot of time was spent climbing up the hill behind our campsite, sitting at the beach, hiking, going for walks, playing in the fort.

The bees were awful when we were there.  One morning we had pancakes with syrup and we literally had to watch each bite as we put it in our mouths otherwise we'd eat bees.  Since it was early in the trip, later that day Gary & I went to Walmart and found a large screen tent that all of us could take our chairs into and pass the food into there.  It worked much better and we actually started enjoying meals. 

The boys had a lot of fun climbing up the hill.  There was a fort up there that someone had built that of course the boys had to try take apart.  Thankfully they couldn't take the whole thing apart as parts were tied together.  But they had fun trying. 

We also went for a walk around the 4 lakes.  We went to the river for a while and the boys had fun throwing rocks into the small river that was there.  We continued on and it was quite the feat with Benjamin in the stroller and Gary & Jake carrying him over boulders, rocks, and places where they had to get the stroller up a steep hill.  But Benjamin had the time of his life doing this.

Evenings were spent around a propane fire that friends graciously lent us for the camping trip.  The boys had fun roasting marshmallows and it was very gezzelig.

Benjamin building sandcastles with Auntie Kathleen

Benjamin was giggling at uncle Larry- it was so hilarious to watch

watching a video before they had to go to bed

Devon on his trusty dolphin- he actually fell asleep on here in the water one afternoon. He was just laying there and when he looked closer he was fast asleep.
Benjamin really enjoyed sitting in the shallow part of the water.  It was great because he could scoot in the water on the sand without it hurting.

Playing in the fort together


our campsite while Jake & Kathy & my mom were there- we are the tent in the middle.

Kyle loved climbing the rocks on our hike

Benjamin enjoying throwing rocks.  Just don't step in front of him like Devon did.

Gary & Jake carrying Benjamin over a rock in the path

It poured the last few days we were there and Devon decided to catch the rain in his mouth

this is how to get the rope down when packing up



August- Grandma's birthday

In August we went to the lake for Grandma's birthday.  It was fun to spend time with family and the boys had a lot of fun playing with their cousins.

Devon enjoying playing with the gravel

Dahlia going to sit beside Benjamin and give him a hug

Dahlia & Kyle playing in the lake together- they are such good friend!

Monday, September 16, 2013

July- the Vancouver Aquarium

Late in July, BC Children's wanted Benjamin to stay overnight in the ICU for 2 nights to see if he could be without Bi-Pap at night.  When we got there he was very upset and starting throwing up but eventually calmed down and went to sleep.  Since he only had to sleep there, the next day my mom met us with our other 2 kids and we went to Stanley Park.  Since we have never been to the aquarium before we decided to go there.  It was really neat.  The kids saw lots of fish indoors and then we went to a dolphin show.  Right before the show they had a penguin walk where 2 penguins walked a line right in front of us.  It was really neat since Kyle & Devon have been asking to see real penguins ever since they saw them on Curious George.  Next we went to the sea lion show.  Kyle ended up going inside with Gary since it was a really hot day and he was starting to look hot and dehydrated.  Since it was getting very hot we enjoyed a screamer and then went to the park where the kids played for a while.  Then we went out for dinner with my mom and Devon was so tired he ended up crying that he didn't want to go home with Grandma.  Since we were at a hotel close to the hospital and knew Benjamin was going to go home the next morning we gave Devon an option-  either you go to Grandma's house or you can come with us and sleep in a bed next to us without your blanket.  He chose to go with us.  He was so tired, he fell asleep almost as soon as he hit the bed.  The next morning we went to the hospital and talked to the doctors about Benjamin.  They said he did awesome and could be off Bi-Pap at night as long as he didn't have a cold.  If he catches a cold over winter he would have to go back on it for a bit.  But for the first three weeks he was off it he cried every night for his bi-pap.  Apparently it became a security blanket for him since he wore it for the last two years and before that wore nose prongs on his face.  So he has never slept with nothing on his face.  But then we went camping and ever since then he has been ok without sleeping with bi-pap.

Gary & I went for a walk with Benjamin while waiting for the others to get there.  This was our view:)







Benjamin having fun going through the tunnel at the park

  
Kyle going down the slide

Fundraising

We have started some fundraising for a wheelchair accessible van.  Please check out the fundraising blog at:

http://benjaminswheelchairaccessiblevanfund.blogspot.ca/

Sunday, September 15, 2013

July- Oyama

In July we also got to go camping in Oyama for five days.  It was awesome weather while we were there and we all enjoyed the water and the company:)  Some of the highlights were the water fights, going to a Kangaroo farm, visiting Oma H., auntie Theresa & uncle Ludwig, driving the lawnmower tractor, swimming in the water, and playing with Oma & Opa and cousins.

enjoying spraying Daddy and Daddy spraying him

holding a kangaroo

holding a baby kangaroo

holding a baby kangaroo

this mama kangaroo had a joey in her pouch that was about 6 months old and had one that was almost ready to be born.  We learnt though that if the one in the pouch isn't ready to leave, she will hold the one back that is ready to be born and will not give birth until the one is ready to leave the pouch
driving the lawnmower with auntie Theresa
Kyle driving the lawnmower with auntie Theresa
my Oma- 2 Greta's
big story for uncle Ben
what a hunk!

sad because I got into trouble for getting into Mommy's makeup