JUMP

Steve and girls clearing off the roof...again!

Wow! I am feeling a little bit closed in here. The snow is literally consuming our yard and home. If you look at the photos below, you will notice how the trampoline is no longer visible except for the net. I have posted this picture before, but you could still see the trampoline. We are getting another foot tonight. Where will we put all this snow? I love it but I am worried because we are continuing to get some water damage in our home. It was contained to one area, but now it is popping up in other areas. The thought of spring thaw is starting to scare me. The video below is of the girls jumping off the roof into the snow. They had a blast doing it. I am still an amature when it comes to making these videos so please exuse the quality of the music. Hopefully I will get better.

Wii...FUN TIMES

At the request of my daughters, we went down to my parents for a couple of days this week during their school vacation. It was so much fun. The girls got to try out Grampy's new Wii and even got to play him in a few games. It was too funny watching them compete against one another. Now I know where I get my competitiveness. Grampy spoiled my girls with lots of attention while I played game after game of scrabble with my mom. I won't mention who came away with the most wins...(did I mention that I was competitive?). Thanks mom and dad for the fun visit.

THROUGH THE YEARS

Ben and I were 9 years old in this picture...

TWINS

20 years ago I...was 14 years old and going through my most goofy period of life. My mom made me play on all my brother's sports teams so she didn't have to travel to two different games. I was in the 8th grade and lived in Northboro, MA

10 years ago I...was 24, married and recently moved back to Northboro, MA from Rexburg, Idaho. I had Kayla and Kaleb and Steve was working for Domino's Pizza still.

5 years ago I was...29 and the mother of four children. We were living in Laconia, Nh and Steve was in his 5th year as a police officer. Our house was only 880 sq. feet and in need of lots of repair. We were pretty squished with 6 people. A new house was on the horizon....yay!

1 year ago I...was spending a lot of time in the hospital with Ben and just started my Thai Kickboxing class. Steve was approaching his 10th year with the Laconia Police Department and Kayla had entered the Middle School - YIKES!!

So far this year I...have been to the temple once, played 4 games of scrabble with my parents, played 2 games of basketball with the men's league at our church and helped shovel the driveway 22 times - WOW!

Tomorrow I...will head back to Gilford with my girls after spending two days with my parents, say goodbye to Ben as he heads to Maine with my good friend Becky Billin, try to make it to my Thai class at 6pm and kiss Kaleb and Steve after not seeing them since Monday afternoon.

In the next year I shall...be better about my temple attendance, help my daughter get ahead with her personal progress, continue my blogging, laugh more and become debt free. (again)

I TAG PAULA, MARIA AND LAURABETH

BIRTHDAY QUILT

Mimi made Stevie this BEAUTIFUL quilt for her birthday. I love it because it is very unique and personal. Kayla received hers for Christmas. Click on the picture to see a bigger version. Thank you Mimi for all the time and effort you put into the quilts, we LOVE them and we LOVE you!!

HAPPY BIRTHDAY STEVIE!

Odione Point Field Trip

Happy 9th Birthday Stevie!

Crazy hair day at school 2005

Enjoying some fried dough at Gilford Old Home Day

St. Patty's Day

Eating a YUMMY dinner

Crazy hair day at school 2007

GOOD NEWS

Kaleb after his MRI today

Good news...after a long day at Dartmouth, Kaleb was given the "all clear" by his neurosurgeon. For those who are not quite sure what I am talking about, Kaleb was diagnosed with an "Arachnoid Cyst" back in June. Two MRI's, one EEG and many appointments later he was told that things are okay for now. She showed us on his MRI that his cyst is not growing and that we don't have to worry about it for now but she did tell us no football or boxing. We will be on watch for any signs of seizures as he will be at a much higher risk for developing them because of his cyst and the results from his EEG. His eyes will have to be tested every two years by a neuro-opthamologist just to make sure they aren't missing any signs. We were very happy to move past this medical issue. Next is his appointment with the audiologist. He had surgery in December to improve his hearing. We discovered that in the last year he was losing the hearing in his left ear. After many tests and exams there was no explanation for this hearing loss and so we opted for "exploratory surgery" in which they found that two of his middle ear bones were fused together. They took the incus out and replaced it with a titanium piece, had to cut a nerve to his tongue and reroute it and took some cartilage from his ear and did some reconstructive surgery. We won't know until the end of March if this worked. We'll keep our fingers crossed!

Kaleb enduring his EEG to test for seizures

DOMINO'S PIZZA

Okay...so I guess I won't save my "hiring and firing" story for another time. (See previous post) Here's the story: Once upon a time in a faraway land (Rexburg, Idaho) when Steve and I were going to college my husband was employed with Domino's Pizza. This was the first job that he worked when we were newly married. He was a faithful employee and quickly rose into the management position. During one summer when I didn't have any classes I thought it would be fun to be with my husband at work. With permission from his boss, Steve hired me. I found being inside the store making pizza and such was too boring so I asked if I could be a pizza deliverer. This was back in the day of the 30 minute guarantee. First of all, let me inform you of my lack of directional skills. I admit it - I am directionally challenged. Second of all, after living in Rexburg for close to three years I could never figure out the whole layout of their streets. According to Steve, it is SO easy to get around compared to out here in the East. (whatever) So...I started my job of delivering pizzas. What a stressful job...this was before the days of cell phones and so if I couldn't figure out the address I was going to, I had to drive back to the store or stop at a pay phone to call. If the pizza was late - the store ate the profit and the customer got it for free. One particular night I was delivering a pizza out in potato farm land and had NO idea where I was going. I think Steve tried to explain to me about 3 different times before I left. (proof of my directionally challenged mind) I drove all the way out into no-man's land and couldn't find the address. I drove up and down different streets, asked numerous people for help - which by the way seemed to make things worse - all the while the clock was ticking. The more I drove the more increasingly frustrated I got which apparantely led to faster driving. I finally decided I would hurry back to the store to ask one more time but on my way back I got pulled over by a state trooper. Are you kidding me? Just my luck. This trooper happened to live on the street I was driving down and was on his way to work. Great! Of course by the time he approached my window I was a blubbering mess, trying to explain how I had no idea where this dumb address was and the pizza was going to be late, blah, blah, blah. The trooper had zero sympathy for me, (would you?) next thing I knew I was holding a pink ticket. I managed to somehow find my way back to the store amidst the tears and confusion. As I walked into the store, I looked at Steve, held up the pink ticket and he casually saunters over to me. As the tears are streaming down my face he reaches his hands out and puts them on my shoulders. He lovingly looks into my eyes as he pulls me in close for a comforting hug and tells me I'm FIRED! WHAT? Thanks for that. Apparantely if you get a ticket as a driver you can no longer drive for Domino's. (somehow I think that my husband found some sort of gratification out of firing his wife...) Thankfully his boss took pity on me (glad someone did) and offered me a job working inside the store.

MY HUSBAND

Steve during the infamous Bike Week in Laconia, NH.

You can see the "Hell's Angel" sign in the background.

I have been Husband Tagged by my friend Laura. I have to say that I wish the questions got a little more informative because there are so many great things about my husband than where me met and when we got married, etc. so I'm going to give you a little more info so you can get to know him just a little bit better. My husband is a "Master Patrolman" for the Laconia Police Department. He's worked there for 10 years and has loved every minute of it. He's their "go to guy" when they need someone taken down. He's large in stature but cuddly as a teddy bear. I think those qualities make for an outstanding police officer. He's been given many awards throughout his career including one for "NH Heroes" because he attempted to save a drowning man. I'll give you the quick version...it was summer (and we have a lot of lakes here) and he was called to a beach where a man was drowning. He went about 30 feet out (it was at night) and couldn't find him so he (uniform and all) dove down over 10 feet to finally locate him. He was the only one there that was strong enough to pull him to the surface. CPR was attempted but was not successful. He risked his life to try and save this man. (I must mention that there was alcohol involved) I was really proud of my husband. Another interest of Steve's (besides me) is Jui-Jitsu. It's a brazilian form of martial arts ground wrestling. He may not be the best in form in his class because he's fairly new and still learning but no one can submit this powerful man. He has earned the nick name of "KONG". His favorite birthday cake is a homemade German Chocolate Cake that he receives from me every year. He likes to play golf, basketball and ski and is the best husband and father in the world. There, I feel better. Here is the rest of the story...

When did you meet? August of 1992 at (formally known as) Ricks College. Steve was actually my Family Home Evening Brother.

How long did you date before getting married? We dated from October of 1992 - June of 1993

Where did you get married? Washington DC Temple

Who said I love you first? Steve did

Who cooks more? I do but according to him he thinks he makes the best chocolate chip cookies in the world. (I asked Stevie who is sitting next to me and she says mine are better - although his are pretty decent)

Who sleeps on the right side of the bed? Depending on the set up of the room, I pick whatever side is closer to Ben since he often needs assistance at night.

Who is taller? Definitely Steve. He's 6'3 and I'm 5'7.

How old is he? Old....he's going to be 37 this April.

Who drives? Usually him, sometimes if I want to razz him up I'll hop in the driver seat. He doesn't like that too much.

Who proposed? Steve did - I could never imagine me being the one to do it - wierd.

Who wears the pants? Both of us. Sundays I usually wear skirts or dresses though. (hee,hee)

Who kissed first? I am not a forward person so again this one goes to my husband. Call me old fashioned.

How many siblings? 3 - 2 sisters and 1 brother

Who does the laundry? Definitely me - his idea of laundry is to see how much he can stuff into the machine no matter what color. A little scary.

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.