Kindergarten

Today we went to meet Kyle's kindergarten teachers and possibly Benjamin's.  It was so great to go to the school and see my kids excited about going to KG.  Kyle and Benjamin have both connected with the teachers already:)  I'm still nervous about sending my kids to school and how they will do etc but I'm sure that comes with them being the first to go to school.  But it was great to go there today and see how Benjamin and Kyle both loved being there.  We showed them the rest of the school and the playground as well.  

The reason why I say that the teachers may possibly be Benjamin's is that we haven't been given the ok yet from his respirologist to send him to school.  That decision will be made in late August.  But if the ok isn't given then school will come to us:)  It may be that he will be allowed to go part of the year and then stay home during the cold & flu season.  We just don't want what happened last year to happen again.

I should have brought my camera to take a few pictures but totally didn't think of it.  So you'll have to wait till Kyle's preschool graduation for some pictures:)

Just a few pictures I came across today:)

Benjamin enjoying the park

Devon showing me his dandelion

Kyle swinging by himself:)

my nephew Jesse giving me kisses

Today is my Grandma's first birthday since she passed away!! I know she's in heaven where there is no more pain and she's having a better birthday party than she could ever have here on earth but I still miss her.  She was a sweet, caring woman who always had a word of encouragement for us even when she was in so much pain physically.  I think of her every time I play the piano!

Kyle has been asking a lot of questions about God lately.  He is a real thinker! His questions really get us thinking of how to answer him sometimes.  Some of the questions he has asked lately are:

Who is God's mother?
Where is God's house?
Does God's house have 2 bathrooms just like ours?
Does God's house have a fridge, stove & dishwasher?
Does God roar and scare me?
Who is Jesus' mother?
When answered, Mary, he asked who Mary's mother is?  (We actually didn't know the answer to that one.  Do you?)
Then he asked if Mary's mother was in heaven too?

It's neat to see him thinking more and be a bit more interested when we read the Bible.

About 2 weeks ago now Benjamin broke his femur. He was standing by the front door with his orthotics on with the nurse right behind him when his legs buckled. He twisted to the side and the nurse caught him before he hit the floor but he kept saying "owie, owie" and screaming. So I got home from picking up Kyle at preschool and she came running out and told me not to take the kids out of the van that we had to go to the ER because Benjamin was hurt. We figured out where he hurt and got the 2 other boys to Grandmas house and then carried Benjamin to the van together and brought him to the ER. When we got there, Benjamin just kept saying "hi" to all the nurses and doctors so I assured them there really was something wrong with him- he just has a very high pain tolerance. When the doctor came to see him I explained what happened and that we weren't sure what he did but thought it was on the left leg. He started squeezing each leg up the leg and got to just above the knee and then Benjamin started screaming!! We went to x-ray and found out that he had a hairline fracture on his femur with a 30 degree angle. So he got casted from hip to toe and is in it for 4-8 weeks. Right now his pain is tolerable but he is not sleeping. He usually sleeps from 7pm- 8am and then naps from 1-3pm but right now he goes to bed around 7/7:30 and whines most of the night. And his naps are about 15-20 minutes and then he starts whining too. We're not sure what this is from since he doesn't seem to be in pain during the day. But we're all a tad bit tired over here from this.

On a more positive note we enjoyed the few days of sun we had- going for walks, playing in the backyard, mowing the lawn, weeding all the flower beds, and biking on the front driveway.

Benjamin has been learning so many new words lately. On Saturday Devon was crying and came to me for a hug. Next thing I know Benjamin is fake crying and scoots to the kitchen where I am and says "I cry." I asked him if he wanted a hug and he bent over to give me a hug in his own special way.

Happy birthday to my little monkey. I can't believe you are TWO already!! It seems like just yesterday that you were born. You have grown so much but you are still Mommy's little baby:)

Some things you love to do:

-drink: unlike your brother you drink a lot. You're always asking for more a juice (apple juice)!

- play with balls

-read books

-talk: you are such a little talker. This morning we went to the store. And you were pointing out every truck, car, a truck (garbage truck) on the way. Then we went to auntie Alice's to drop off something for Jesse and you told me the whole way home "Awice weeeeping"

-play with your brothers: you are going to be so lost when they go to KG. Every time Kyle is gone to preschool you can't wait until he comes home.

-eat chocolate

-watch Curious George & Barney

-chew on your banket (blanket): sometimes it is so disgustingly dirty and stinky from you chewing on it.

You are so adorable! You get so excited about the little things!! It is so much fun to watch you and play with you. I love you so much:)

Happy Birthday to my two sweet boys!!! When I think of how far you have both come in the past year I am amazed.

Benjamin, last year was not a fun birthday for you! You were on ECMO and a thread away from death. It is amazing that we can celebrate your birthday with you this year. You have come so far!! I love your determined character! Anytime you can not do something you will try and try and try until you can. You are learning so many new words right now. We can't understand a lot of them but they definitely make sense to you. You now love to read books to yourself and will turn the pages and pretend to read. You love to play with your two brothers and sometimes annoy them. You love to play with your Daddy when he gets home from work. You love to try climb on him. You love life even though your life is not the easiest.

Kyle, you have not had an easy last year either. All the emotions that came with your brother being so sick are finally working their way out. You have a sweet sensitive character and care about the people around you. You love to read books and play cars. You love to make us do exercises at night before you go to bed:) You love to play with your brothers but also love to play by yourself in your room. You love to climb on Dad and read with mom. You love Curious George & Bob the Builder and would watch it all day if you were allowed to.

I hope you have a fun-filled birthday! I love being your mom even though I may not always be the best mom. Happy 5th Birthday Benjamin & Kyle!!

Benjamin- February 2007

Kyle- February 2007

May 2007

August 2011

Benjamin is home:)

Yesterday Gary & I went to visit Benjamin after lunch. I snuggled with him in bed and fell asleep myself for a bit. After he woke up a bit more the nurse asked if he'd like to play on the mat. So we played on the mat for a bit. He kept trying to open the door and got his leg out and was saying "bye" to us. Then I went to the nurses station to ask if we could take him for a short walk outside in his wheelchair. She said she'd check with higher authority and get back to me. Since we also had some questions about the venting set up being different than the day before she talked to the doctor and confirmed what we were supposed to be doing at home. She asked the doctor if we could go for a short walk outside and his reply: "Well, would they like to go home?" YES, of course!! He asked if we had all the supplies we needed to take him home. We told them that we didn't have his saturation monitor or his feeding bag but that we could just keep an eye on his color and feed him a bit late. So after much packing up off we went. We had a lot to take home. Since everything in his room gets thrown out after he leaves because of the respiratory infection etc we went through all the drawers and got a few bags of different supplies. Then we stopped at Debbie's house to pick up our other kids and had some dinner there and then went home. We had a few glitches at home since we had forgotten part of the bi-pap cord in his room but thankfully we found a cord that would work from our camera charger. We are thankful to have him home. He was very excited to be home but still tires out very quickly. Hopefully he'll gain his strength in a few days. We are just excited that he can be home for his birthday on Wednesday.

Benjamin is doing good:) Right now he is doing 2 1/2 hour trials off the bi-pap four times a day. He mostly does ok with that although at times his saturations do dip into the mid 80s (they want it 92 & above). The plan is to keep weaning him off the bi-pap until he is only on it for his nap & nighttime. This is what he was at before. However, they have to go slow so his lungs realize that they need to work. Because he was on full-time bi-pap for a while, his lungs have come to depend on it and when he is off they sometimes don't realize that they have to get working again. The hope is that he will be able to come home by Monday. Which would be awesome since his birthday is on Wednesday and I really don't want to have another one of his birthdays at the hospital. I will be glad when winter is over and all the germs go away! I'm thankful he is doing this well since we were told that they were surprised that he wasn't worse because of his history:) I guess his lungs have gotten stronger since last year. He keeps the nurses busy now that he is getting better. I can tell he's about ready to come home- pulling off his foot probe, pulling his bi-pap off when he's supposed to be wearing it, trying to climb over the bed rails (they lowered the bed as low as it would go), making his alarm go to the high pitched one (means his saturations are really low) so that the nurses will come running only to find out that he was just trying to get them to come say hi to him. I'm not exactly sure how he does the last one but his saturations are down to 49% and when the nurses come running they go back up to 95% and he starts laughing at them. What a goof!!

Kyle has talked a lot on the phone to Benjamin and every night when he's in bed asks us if we are going to pick up Benjamin when he's better. We think that he thinks that because Benjamin can talk he's all better and should come home. He also asks us if Benjamin is alone and I told him that God is always in the room with Benjamin even when the nurses go out of Benjamin's room. And then I told him that God was beside Kyle too. Kyle replied "No, God is with Benjamin, not here with Kyle!" His mind can't quite grasp that God can be everywhere.

Today Benjamin had an amazing day!! This morning he was off the bi-pap and on 2L of oxygen for a trial of 1 1/2 hours and then another trial of 1 3/4 hour. Then this afternoon when we were there he had a 2 hour trial. During this time we gave him a bath in their baby tub. He just fits! There was water everywhere since he kept splashing. And when we asked him if he wanted to come out he said no. So our nurse said he could stay in there until the water was all gone from him splashing. So Benjamin decided to splash even harder. Then when he was done his bath he was really tired so we put the bi-pap back on and went to have a snack. He nicely fell asleep and when we came back he woke up soon after we were there. He had another trial off the bi-pap for an hour. He had to stay connected to the saturation monitor but they took his leads and the feed off. I held him for a bit but he kept trying to get off my lap so we took his mat, put a blanket on it and let him scoot and play on it. But he kept trying to escape:) He would scoot to the door and try to open it but his foot probe was still on so he could just touch the door. Every time the nurse would open the door, he'd scoot over there and wave at us and say bye and try get out the door.

He definitely seems much better than when we were there on Friday. Hopefully he'll be able to come home this week. He still has a bit to go but has come a long way in the past two days. I forgot to bring my camera today so I don't have any pictures for you. It would have been nice to have a picture of him splashing and water everywhere!

Benjamin is doing a teeny bit better. His pressures are still the same 16 over 10. His normal pressures at home are 15 over 10 so he's not too far from his normal pressures. His oxygen ranges between 30-50% depending on how he's feeling, what he's done for the day etc. Right now they are trialing him off the bi-pap during the day for about 10-15 minutes at a time. He's only been doing it once a day since Thursday but he is doing ok off of it. They want to increase it to about 4 times a day over the weekend depending on how Benjamin does. He does seem to be out of the woods although a lot can happen in the ICU. It's just very slow going right now. Not a lot changes from day to day. We've been asked the question of when he will be able to come home. The answer is that we really don't know. Neither do the doctors know. Benjamin is a boy who does NOT follow any sort of normal. He just follows his own pattern. So it all depends on him and how his lungs are doing. The doctors know that they can't push him aggressively or it will backfire. Usually he gets really sick with a bang but he also gets better with a bang. So it could be a few days or it could be a week. We just don't know. He is getting agitated at times which is a really good sign since at first he didn't even have the energy to be mad. And when I was there on Thursday Opa Jake & Daddy stopped by to say hi on their way to the airport and Benjamin got really excited to see Opa Jake. The little stinker hadn't even smiled for me yet but was just agitated or sleeping and when Opa Jake walked in the room he was all smiles. "Hi, hi, hi" You made his day Opa Jake. He then tried to sit up but couldn't quite get up so we propped him up and supported him a bit. By the end of the visit he would sit up and throw himself backwards on the bed. It became a game for him. Which ended in a coughing spell but at least he had some fun:)

We are enjoying the sunshine today with our other 2 boys at home:) Our plan is to go in every other day to see Benjamin- myself during the day and then Gary the off night that I don't go during the day. This gives us a chance to spend some time with the other boys as well.

Benjamin is doing good today although he is miserable. He is still at the lower pressures and they have now weaned down his oxygen to 35%. But this afternoon when Gary went to visit him he was very listless and didn't smile at all. When I went to put Kyle & Devon to bed, Kyle wanted to phone Daddy to say goodnight. So we got a hold of Daddy and Kyle & Devon both got to say goodnight to him. I then took the phone back and was talking to Gary when Kyle said "I want to say goodnight to Benjamin too!" So Gary put the phone by Benjamin's ear and as soon as Kyle started talking Benjamin had a smile for the first time today. There is such a special bond between those two even though they don't always show it. But now Benjamin is back to listless and the doctors are starting to wonder if there is something else wrong. They checked his j-tube placement and that is ok so now they are checking into whether he is constipated. I hope this is the case because then it is just a quick fix.

When Kyle went to bed he also told me that he wanted to give Benjamin a hug & kiss goodnight too. Poor guy, he misses Benjamin SO much!! He still hasn't fallen asleep yet which makes me wonder if he can feel Benjamin's pain somehow.

I just got a picture from a medical student that came along in the helicopter. I thought I'd show it to you.

Today was a really good day for Benjamin. His pressures on the bi-pap got turned down to 16 over 10. They had to turn his oxygen up to counteract the pressures being down but are currently trying to wean his oxygen. He was really happy when I went to visit him today. He was playful for quite a while and then tried to go off to sleep. Since they are doing construction right behind his room he was quite annoyed with the noise. But they are going to move him if he becomes too agitated.

Please continue to pray for Benjamin and also pray for Kyle who is having a hard time dealing with his twin being in the hospital again. Tonight he had a stomach ache and Gary asked him if he was scared. He said "yes" so Gary asked him what he was scared of. His response: "Where is Benjamin?" Gary: "In the hospital." Kyle:"Is Benjamin going to come home?" Gary: "When he's better." Kyle: "But he has to come home!" He doesn't talk about it much but we can tell that he is scared of Benjamin not coming home from the hospital.

This morning Benjamin seems to be doing a bit better. In rounds they talked about starting to wean a bit more aggressively but the head doctor who knows Benjamin from last year thankfully vetoed that idea. He then asked us what we thought and we agreed with him. If we push Benjamin too hard it usually back fires. This is the first day he seems to be doing ok. His pressures are still very high but his oxygen has come down to 40%. Although when he is awake his saturations are worse this morning. Which is a little weird because it is usually the opposite for him. This morning he was also in a bit better of a mood for a little while. He would slowly move his foot toward us, we'd tickle it and then he quickly move it back and then after a little while he would slowly move it to us again. We did this over & over for a few minutes and then he tired out. It will be a slow go for a bit still but at least he seems to have squeaked by without needing the ventilator. The doctors are pretty optimistic about that. But they also say that he's in the ICU for a reason and that things can happen.

Please pray for peace for Benjamin and also pray for all the other sick kids who are in the ICU. It's hard seeing so many sick kids. Kids should not have to go through this and be used to the medical equipment!

Benjamin had a rough night. He was very agitated and his oxygen requirements went up to 80% and they also increased his pressures. They are trying very hard to keep him off the ventilator as if he is put on a ventilator he could be on it for weeks and it would be a very long hospital stay again. We found out this morning that they are quite concerned about this cold since the virus is in the same family as RSV. This morning when we came we thought his bi-pap mask was irritating him as it was partly in his mouth. Since Benjamin has reflux he absolutely hates anything in his mouth unless he puts it there himself. We let them know this and they took the mask off and put it back on again and instantly he calmed down and fell asleep for a bit. He is doing much better this morning oxygen wise. He is currently down to 55%. They are cautiously optimisitic right now that he might be able to pull through this without being vented. They are trying their very best to do everything not to vent him. It would be better for Benjamin if he can squeak through this just on the higher pressures on the bi-pap. Then it would only mean a week or two in the hospital instead of a month or two. He hasn't slept good since Thursday night so if he doesn't settle to sleep they are planning on giving him some chloral to put him to sleep. Please pray that he would settle to sleep and have some peace. It's hard to see him so agitated. We are praying that he will continue to be able to avoid the vent. Yesterday our prayers were answered as he was minutes away from being vented and started to improve. Thank you God! Thank you for all your prayers and support.

Benjamin has gone downhill since yesterday. This morning his IV stopped working so they had to put in another IV. He just layed there and didn't fight them at all and if you know Benjamin at all you will know that he HATES getting IVs put in. In fact, he has given someone in the Chilliwack ER a black eye while he was putting in an IV. When I came this afternoon he went further downhill and his oxygen is up to 70% and they had to turn up his pressures on the bi-pap. They were giving him 20 minutes and then were going to put him on a ventilator but his saturations improved a touch so they are holding off for now. However, I personally don't think that will last long. They have a ventilator in his room ready for him. It's basically just a matter of when. He still has his moments when he is awake and saying hi to us but most of the time he is agitated. He hasn't slept yet today since he is having a hard time sleeping with the coughing.

We pray that God will be with him and give him the strength he needs to get better. Please pray for peace for Benjamin that he would be able to settle down to sleep. His breathing is still very fast so they are a bit concerned with that.

Tuesday night Benjamin came down with a fever and by Wednesday it was a full blown cold. We phoned his pediatrician and went in to see him but by the time we saw him Benjamin was doing much better. So he listened to his chest and said that he seemed ok and could he come to our house that afternoon to check on him again. He came over that afternoon and Benjamin was still doing good. He played ball with him for a little bit and assessed him and decided that he would come by in the morning again and told us to phone him anytime if we were concerned or meet him at the ER. Benjamin did get a bit worse that night but we still weren't concerned. By the next morning he was on 4L of oxygen and slowly going downhill. We called the doctor to see if we could give more ventolin since Benjamin's heart rate was already elevated. He gave the ok and said he'd come over a bit later since he was on his way to a c-section. He came that afternoon, listened to him and decided to phone Childrens to have a chat with Dr. Denny (a doctor from the ICU who is following Benjamin). It was decided that Benjamin would go out to Childrens as he was slowly getting worse. We were asked if we felt comfortable driving him but since it is a 2 hour trip I said that we were uncomfortable with that as a lot can happen in 2 hours and we were reaching his downhill time of day. So we met the doctor at the Chilliwack ER and they decided to helicopter us out. Gary went with while I stayed home with the other 2 boys since it didn't seem like Benjamin was in critical danger. We had the same Infant Transport Team person as almost a year ago. He told us that he had spent the last year trying to forget about Benjamin and what happened in the OR and on the flight almost a year ago. He was thankful to see him looking much better this time. Gary & Benjamin flew out to Childrens and Benjamin did go a bit downhill in the helicopter so we were thankful we decided not to drive him.

This morning he slowly went downhill again and they decided to put him on bi-pap full-time since he was working too hard to breathe with the noseprongs. Then late morning they decided to trial him for 10 minutes off the bi-pap but had to stop the trial since Benjamin was not handling it. This afternoon we had to weigh him since a lot of the medications are based on weight and he hadn’t been weighed in a month or so. We unhooked him from his feed etc., took him out of bed, weighed him, and put him back in bed. He was exhausted just from that. He is definitely weak but he still says hi to us and tries to smile at us. Early evening they decided to switch him to a different bi-pap machine that controls the oxygenation a little more accurately. The one he was on is his home bi-pap and they had the oxygen hooked up at 12L to it but his one goes by percentage and is a little more accurate. So now he is on that one and is at 45 % oxygen (21% oxygen is room air to give you an idea of what that means). Hopefully tonight is a good night and he doesn’t go further downhill. We are praying that he has reached his peak and will slowly start getting better. They have done testing and it is just the common cold and not RSV or whooping cough thankfully. But it is still affecting him quite hard. But then it has been a nasty cold for Kyle, Devon & myself as well so I can see why it would affect Benjamin this way.

We are praying that Benjamin will not have to stay in the hospital a long time and that he may be able to come home soon. It is hard for us as all the emotions from last year come rushing back. But we pray that God will give us the strength to get through this trial as well.

Please pray for strength for us as Gary is running on little sleep and Kyle, Devon, & myself still aren’t feeling 100% and Devon and I are running on very little sleep. I’m praying Devon sleeps tonight as last night he cried till 3 am and then I woke up at 6am.

I’ll try to keep you updated as I can.

Right now I’m struggling with what to think about what the doctors told us just a few weeks ago. We were at neonatal follow up when Benjamin started having seizure after seizure right in front of the pediatrician. I hate it when Benjamin has seizures because there is absolutely nothing I can do for him as he doesn’t even like to be touched. But this time I was thankful that he kept having seizures. For the past 5 months he has been having these new seizures and the doctors weren’t even sure IF they were seizures. I had taken videos of them to show the doctors but no neurologists had ever seen them in person. So we got, “well, maybe they’re seizures, but they aren’t the classical ones so we aren’t sure.” Since they couldn’t even tell us whether they were seizures there was no way to treat them. Well, when we went to neonatal follow-up and he kept having seizures the pediatrician called a neurology resident that was in the same clinic, who called the ER and within a few minutes Benjamin was in the ER hooked up to an EEG. He had about 3 on the EEG and they showed that they are focal point seizures which are stemming out of the right frontal lobe of his brain. Finally a diagnosis of seizures after 5 months! We talked to the doctor and right now are in the midst of trying to find a new medication. He has started one right now but I don’t see any change. The neurologist we talked to also mentioned that he would be a great candidate for brain surgery. That has never been brought up before so it was a bit of a shock. But these past few weeks I have been thinking a lot about it. And now that I don’t see a difference in the medication yet I am really thinking about that option. Benjamin is still not at the full dose in the new medication but usually we can see a bit of a difference. Instead his seizures are becoming more frequent. Although that could be due to lack of sleep over Christmas as well. I find it all a guessing game sometimes. And with him getting further down the list of medications that will work for him I wonder if surgery would be the route to go. But then, we haven’t really discussed it in length with the doctor either so we don’t really know the affects of surgery, etc. For now, we just plod along with the medication and hope and pray it makes a difference for him. At least it isn’t causing rage like another one of his medications he tried did. Please pray for continued strength for Benjamin as I know this is hard on him and really disorientates him having so many seizures.

This morning Devon was reading a book and there was a dog in it so he kept pointing and saying "dog." All of a sudden I hear Benjamin saying "woof." He's definitely starting to pick up on a few words. The other day we saw Benjamin sitting in the living room reading "Five Little Monkeys Jumping on the Bed." He would turn the page and say "dunkey, dunkey, NO, dunkey, dunkey, NOO, dunkey, dunkey, NOOOO"

Oliebollen

Mmmmm..... for the first time ever Gary & I made oliebollen together. So delicious. Thank you Olivia for the recipe!!

If you are looking for a good recipe, here it is:

2 cups sugar

4 eggs

8 cups flour

4 tbsp baking powder

2 tsp salt

1/2 tsp cinnamon

1/4 tsp nutmeg

2 to 3 cups raisins

4 to 5 cups diced apples

4 cups milk

Mix all ingredients together.

Drop dough into hot oil, spoonful at a time

Fry for about 4 minutes

Check inside to see if they are done

We omitted the raisins since my dear husband doesn't like raisins.