THE VALUE OF LIFE

(My favorite picture of sweet Benjamin)

*****

A few days ago I was sitting at my older son's (Kaleb) baskteball game holding Ben in my lap. He was needing some assistance so I reached over and turned on his suction machine to help him out. As I did this, one of the parents of a child on Kaleb's basketball team leaned over and asked me, "what happened to him?" It kind of threw me off guard a little bit because I wasn't sure if he was wondering why I was suctioning him or if he wanted to know why Ben was handicapped. I had to clarify with him and found he was asking about the latter. I have been asked this question many times in Ben's life. Most of the time I am completely fine with it. That day I was a little reserved in how much I shared because right away I am usually able to discern whether the person is genuinely concerned or just being nosey. This man was NOT genuinely concerned. I was polite and gave him the quick answer "his brain did not develop when I was pregnant with him". Of course that led to more curious questions like "did you know when you were pregnant with him?" I will always answer honestly so that people know where I stand on the value of life, whether they agree with me or not. During our brief conversation he flippantly remarked that he and his wife knew their first baby had spina bifida and so they aborted because "they didn't want to deal with what I was dealing with". It made me sick to my stomach. I couldn't believe that he could throw that out there so casually as if we were talking about the weather. It made me ill knowing that he was sitting there next to me and devaluing Benjamin as a person, like he was something that should have been thrown away. I understand that this person does not have the knowledge that I do and so mostly I just feel sorry for him. I feel sorry that he lost out on the chance to raise a child with special needs. I feel sorry that he doesn't realize just how valuable these children are. On the other side, how blessed am I to realize the full potential of these children? To be blessed to be a parent to such a child.

HAPPY HEART DAY

LOVE IS...

Love is a husband that makes you laugh every single day.

Love is when siblings share a muddy wheelbarrow
with you because there is no where else to cool down.

Love is when your Aunt sends you a lifetime supply
of chapsticks so that your lips will stay kissable.

(Thanks Aunt Suzanne!)

Love is when mom will let you lay with Ben until
you fall asleep because sometimes you get lonely.

Love is when daddy pretends to be a horse and
carries all three kids to bed at once every night.

Love is a buddy who'll stick by your side no matter what!

SNOW WHERE TO GO

Dinner by candlelight

This was the night of the storm, we lost power as you can see. It happened twice during the day. The first time was around lunch for about 1 hour and the second was at dinner time. Thankfully I had just finished baking my pizza so our food was nice and hot. The power did not return until 12am which meant that I had to stay up and play nurse to Ben. Because the power was off, the pulse oximeter wasn't working. That means that we would not be able to tell if something went wrong with Ben while asleep. I called the power company to get an estimate and they were pretty accurate as they had told me the power should be back by midnight. Time to look into getting a generator.

Our yard is completely buried now in almost 4 feet of snow

Happy snow day. Is anybody getting tired of all this snow? Of course I realize that not everyone is getting this much white stuff. I have mixed feelings. I always love a good storm but I'm thinking that summer is going to feel really short this year with all of our accumulated snow days. Today made 6 snow days which puts us to getting out on June 23. That seems SO far away. It's only the first half of February which means that more snow is expected. Steve and Kaleb spent the evening yesterday cleaning off our roof to prevent further damage from all the ice build up. Kaleb thought he was pretty cool shoveling the roof without any help.

Kaleb out playing in the freshly fallen snow

The poor trampoline is almost completely buried in snow

Our shed top heavy with snow

Kaleb and Steve cleaning off the roof in preparation for todays storm...

BENNY

Ben still sleeping this morning after an exhausting night...

Last night was one of those nights that you hope you never have to live through again. It all started when we were finishing up Family Home Evening and trying to get our children into their beds. Steve was helping me with Ben because he is the most time consuming when it comes to bedtime routines. Just to give you an idea, here is a quick run down of our routine with him. First we make his feeding (he eats all his meals through the night) and hook his feeding pump up to his g-tube. Next we mix up his medication for the night. He is on Clonodine (to help him sleep), ditropan (for bladder spasms) and baclofen (for contractures). After meds and feedings are running we hook him up to his pulse oximeter - it's a machine that reads the oxygen levels in his blood and tells us what his heart rate is. This machine has an alarm on it to let us know (while we are sleeping) if his oxygen goes too low or if his heart rate drops too low or rises too high. It's our peace of mind while sleeping. He has a suction machine next to him for the times that he needs to be suctioned. Because of his trach, he doesn't have the ability to humidify the air he breathes in like we d0 via our nose, so we have him hooked up to a "trach collar" that you can see in the picture above. This is connected to a heated humidifier and compressor so that through the night his air is humidified. Lastly we have to catheter him and leave it in all night to drain his urine. This is when the problem happened. As Steve advanced the cathetar through his urethra into his bladder, Ben started bleeding profusely. We immediately took the cath out and noticed that he was still bleeding pretty good. It took about 5 or so minutes for the bleeding to slow to an ooze. We called the ambulance and they came and took him to the local ED. Unfortuanately my youngest daughter Stevie was watching the whole event transpire and was so traumatized by all the blood. Anyway, the night was beyond frustration because on the way to the hospital, the EMT took a poor reading of his blood oxygen (83%) which made everyone go into panic mode at the hospital. They initially ignored our whole reason for being there and spent over an hour trying to get a blood oxygen level. When they finally got one it read 100% - duh! It would seem to me that if you had a patient that was bleeding, you would atleast want to take a blood pressure - they never did. Instead they spent over an hour looking for a foley catheter that would be the correct size. When they finally did find one, they were almost ready to insert it when (thankfully) one of the nurses noticed from the wrapper that it had latex in it - Ben's allergic to latex. Potential disaster averted. So...we waited another hour or so for them to locate a cath that was latex free. Meanwhile Ben's belly became more and more distended. They finally came back telling me they didn't have one and could Steve drive one of our cathetars over to the ED. (Sure, he'll just leave three sleeping children to drive 30 minutes roundtrip to bring you one of our catheters because your hospital isn't suitably equipped to handle my son) Finally Steve arrived and the cathetar was inserted and he drained a lot of blood/urine. They took a culture of the urine and sent us home with a diagnosis of "blood in the urine". (you think???) We didn't get home until after 1am - 5 hours it took them to put 1 catheter in and take a sample of urine. Both of us were exhausted that I decided to wait to call his urologist in the morning. After getting the kids off to school I called the doctors up at Dartmouth. Many phone calls later it was determined that I didn't have to drive Ben all the way up there at this point (thank goodness) because the bleeding has pretty much stopped. According to his doctor - this bleeding episode isn't too unusual for kids that have to be cathed regularly. Sometimes there can be an irritation to the lining and cause that much bleeding - it was pretty alarming for us amatuers. Anyway, the plan is that we have to keep this cath in for 10 whole days so that it will allow enough time for whatever happened to heal and to prevent any clots (which we are still seeing) to block his ability to pee. The nice thing is that he emphasized the fact that Steve did nothing wrong, it just happens. (that will make him feel better) The down side is that whenever we move Ben from room to room or take him anywhere in the car, his bag will go with him. UGH! It will be a long ten days...in the meantime, I've earned a nap, I'm off to go take one.

This picture was taken today around 10am. You can see that his urine still has blood in it. We will continue to monitor it.

ALL-STARS

Both Kayla and Kaleb made the all-star team for basketball this year. Kaleb is in 5th grade and out of almost 40 5th and 6th graders he was picked. (this is his second year in a row, he played on the 3rd/4th grade all-star team) Kayla is in 6th grade and made the all-star team for the first time. She has really improved this year. I can't wait to work with her this summer to take her game to a higher level. It has been fun watching them both improve - the games are getting more exciting to watch. Today we spent the whole day at a tournament. Both teams lost their first game and won their second. None of the pictures I took of Kayla came out (they were all blurry) so I added a picture from one of her middle school game this year. I am so glad my children love basketball, must be in the genes. (smile)

FLOAM

I know...it seems like I have been posting a lot of Stevie and Ben, but I couldn't help it tonight. While I was making dinner, (the other two were at basketball practice with Steve) Stevie decided that she would get out her floam and play with her brother. It was too cute. Someday (so I keep telling her) she will make a great nurse, or physical/occupational therapist. She is so good with Ben and is sensitive to his needs. After molding and playing for awhile, she decided that she would help Ben with his tight fists by opening them and molding them around the floam. She was so pleased to see that it helped him open his hands. She knows how important this is for Ben. It was so much fun to quietly watch the interaction between the two. I finally couldn't resist any longer and had to get my camera to take some pictures of them. I thought both sets of grandparents would especially enjoy seeing these pictures.

POO IN MY SHOE!

Okay, so I had to blog about this...the other day my husband went to play basketball with some men from church. Just so you know, it's been a long time - maybe 6 months or so - since they have been playing so this was Steve's first time in awhile. He was telling me that as he was changing out of his sneakers into his basketball shoes, he tried to get one of his feet into the shoe but couldn't, something was inside. He wanted me to guess what it was??? I had no clue. Apparantely some mice have been seeking refuge in his basketball sneaker and built a nice little nest inside. As everyone knows, when you have mice - you have lots of little droppings. Therefore, he had "poo in his shoe". The surprise of all surprises was that along with the nest and droppings, there was a dead mouse. Could you even imagine? Slipping your foot into the shoe and finding all of those treasures? He told me that he was ready to call it quits before he even got a chance to play - but he sucked it up and played anyway. (after dumping the contents first of course) Kudos to my husband for coming away semi-unscathed because I'm not sure I would have survived that too well.

CRAZY DAY

Did I mention in my previous post that some days can be crazy? Well today was one of those days. I woke up at 6am like I usually do, got Kayla up to feed and put the dogs out - and while she was doing that she happened to mention that it was snowing out. Upon informing me about the snow she asked if there happened to be a delay. I ran up to the computer to check and sure enough there was a delay. I sent her back to bed and continued to make the cinnamon rolls that I had let rise overnight. Before I continue I need to tell you that every Christmas I make cinnamon rolls for all the doctors and nurses that take care of Ben including all the ones in the PICU. This year (as you all know) I was in the PICU with Ben until the day before Christmas so I didn't get it done. Everyone looks forward to my cinnamon rolls and so I didn't want to let them down. I have already finished about half (as the list seems to grow each year) and wanted to get some more done today since we were making another trip up to Dartmouth for some appointments. So I made the cinnamon rolls and showered, was about to get Ben dressed when I got a phone call from a friend of mine. I answered the phone only to hear her say, "Happy snow day!". I quickly corrected her by saying, "you mean happy school delay". Because the snow was coming down pretty fast and furious they changed the delay to no school. Great. Don't get me wrong, I love snow days - but only when I get to stay home. I fed the kids breakfast, left a list of chores for the girls to do and packed my boys (and the cinnamon rolls) and headed up to Dartmouth. The usual 1 hour 20 minute drive took me about 2 hours because of the snow. I almost thought about turning back when I saw a tractor trailor tipped on it's side halfway down an embankment, (pretty scary site) but we forged on ahead and reached our destination. I was hoping that maybe because of the weather the parking garage would be empty - NOT!! The parking garage that they have has 10 levels. Guess what level we had to park on? Level 10 - the roof. The picture you see above of Ben is on the roof of that garage. The snow pile behind him was easily 12 feet high. That is the snow that was cleared from the 10th level parking lot. We ventured inside to our appointments, delivered our rolls to the different doctors and visited a friend whose baby is in the Intensive Care Nursery. We were finished with our day around 2pm and headed for home. We arrived at the house around 4pm and got to work on the driveway because Steve wasn't home yet. We finished just in time for dinner and scriptures before heading out the door to mutual. Whew!

A perfectly good snow day and I wasn't home for it.

BLESSED

Today my son's physical therapist was over working on Ben. Her name is Denise and we love her to death. Some of my family members have met her and think she is pretty swell too. I love having Denise come twice a week because we have such great conversations about life, family, religion, politics and many other topics. (of course she is all hands on Ben while we are chatting...) So during our conversation today, she asked me a profound question. One that made me think and ponder. The question was this..."If you could describe your life in one word, what would that word be? I thought long and hard about it. After much pondering I decided that the way I would describe my life is "Blessed". I can honestly say that I feel like my life is blessed in so many ways. Don't get me wrong, there are moments and days where life feels out of control but for the most part I am happy and feel such a balance. Here are the reasons that I feel my life is blessed:

I am a daughter of God who loves me and I love him. I have great parents (and inlaws too) that gave me such a wonderful childhood. I have a close relationship with my brothers and sisters and even though I don't see them as much as I would like, they mean the world to me. I married a fantastic and funloving husband who does so much for me and also allows me to be who I am. We have 4 amazing children that seem to be headed in the right direction. Most importantly, I have the gospel in my life that opens up avenues I never would have traveled had it not been for my parents and their decision to join the church many years ago. On a smaller scale, we have a house to call our own and we have two cars to get us where we need to be. For the most part we don't want for things, my husband has a terrific job that he loves so much. We have an awesome ward that feels like our family away from family. They look over us and take care of us when things are hard. We have developed concrete friends out in the community that we deeply love.

I could go on and on but I think you see the point. I now ask you (the reader) if you could describe your life in one word, what would it be? Please leave your answer in the comment section. It will be fun to see what everyone comes up with.

HAPPY BIRTHDAY RICH

"Brothers gotta HUG"

Happy Birthday Rich!!! Because I didn't make it down to your little surprise party last night I wanted to atleast let you know I was thinking of you today. I finished your "edible" birthday present this afternoon and will be mailing it out in the morning. Hopefully you'll receive it in a couple of days. I imagine that you had a great day with all ten of your children and your sweet wife. I hope that you were atleast made to endure the "spanking machine". (smile) We love you Rich! From all of us here at the Orton home...

White Elephant Party 2006
The REAL DEAL

Kelly and Rich at Jenny's for Easter dinner 2006
Isabelle and Moriah with their Dad after the egg hunt 2006

The Blues Brothers make an appearance at the Hutchins' Family Reunion 2oo6
Hutchins' Family skit 2006