Saturday, October 25, 2014

Christmas Eve

Last night was Christmas eve for the VanLeuven family.  And what a night it was!  Follow the link and be sure to watch all four videos, but if you only watch one, watch the 10pm video and listen to the sweet things Merrill says to Ethan about Christmas.

http://www.ksl.com/?nid=148&sid=32083427#oowaOauefpIcMA8A.01

Friday, October 24, 2014

Yesterday and Today

A week ago I asked for help with a semi-secret project and I'd like to now share that project.  A week ago is when we found out about Ethan and his prognosis.  About a week before that my mom asked me to help her contact people and ask them to help us shower Ethan with birthday cards.  When we learned that his time was limited we knew we had to act quickly.  So we both posted to Facebook (blocking his parents and other family from seeing the posts) and asked for birthday cards to be sent to us to deliver to Ethan.  Over the weekend I collected several cards which we delivered on Sunday.  Over the next few days I collected even more cards, about two dozen that I took to Ethan on Wednesday so he would have them for his birthday celebration on Thursday.  I'm am happy to report that the cards continue to roll in and I will continue to deliver them as long as they keep coming.  I feel blessed to be able to help in this smallest of ways and to make these days just the tiniest bit brighter for Ethan and his wonderful family.

The story has gone national!

http://www.today.com/video/today/56292584#56292584

See his birthday celebration here (make sure to watch all 4 videos):

http://www.ksl.com/index.php?sid=32074766&nid=147&title=utahns-celebrate-holidays-with-terminally-ill-boy-for-the-last-time&fm=home_page&s_cid=topstory

Thursday, October 23, 2014

Helping Ethan

A sweet boy heard about Ethan, here's what he is doing for him

http://www.ksl.com/?nid=148&sid=32064511#hCVoLLej9qDTFw6O.01

If you'd like to know how to help Ethan and his family you can go here:

https://www.facebook.com/fundraiserforethan

or here:

http://www.gofundme.com/ethanourhero

Wednesday, October 22, 2014

A Little Early Halloween

Little Ethan is nearing the end of his battle.  He has been given 2-8 weeks.  No matter when he finishes his mortal fight it will be far too early.  But his family and neighbors are doing what they can to help make these some of the best days by helping him and his family celebrate his life.  A local news channel found out about it and are doing a series of stories about Ethan and his amazing friends and neighbors as they celebrate Ethan and his favorite holidays this week.  Here's the first of the stories:

http://www.ksl.com/?sid=32047963&nid=#ijxrWTzjUCQ7P2si.01


Thursday, October 16, 2014

Shhh...

I am working on a semi secret project.  If you would like more information about said project please comment with your email address or email me directly at lmeestone@gmail.com .  If you think you might know what the semi-secret project is please don't reveal it, it's a secret!

Melissa

Edited due to an autocorrect failure that changed my email address.  There is still time to help with the project.

Sunday, October 12, 2014

Mr. E's haircut


In case you haven't noticed, all three of my children have red hair.  It was one of the first physical traits I noticed about Ethne when they laid her on my chest after she was born.  It's also the first thing the nurses have all said to me about each of my babies.  We are often stopped by strangers commenting on how cute/cool/neat/pretty/etc. it is that both the boys are red-heads, and often we are asked if dad (who usually isn't with us) is a red head or where the red comes from.  I love the red.  I love that, even if my kids look nothing alike when they are older (who am I kidding, they all look like little clones), they will have this one trait that ties them together.

a tiny piggy after the hair tie had been removed
Ethne never had very much hair, much to my dismay.  When she was a baby I always made sure that she had a bow or headband on so that it would be obvious that she was a girl.  I asked hairdressers for tips to help it grow, I considered heeding the myth that shaving/cutting it would make it grow faster, and I tried to style it as soon as there was even a hint of length to do so.  By the time she was 18 months old or so I was finally able to put tiny pigtails in it.  She tolerated my neuroses well and let me comb, pull, and otherwise manipulate her hair to my heart's desire.



You can't put piggies, even tiny ones, in little boys' hair.


A few months back I told our hairdresser that I missed having hair to style so we gave Mr. E a faux-hawk.  Lawrence wasn't a fan, neither was Mr. E.  Then I just kind of let it grow (cue Frozen puns).  It got longer, and started to curl at the ends.  It covered the tops of his ears.  There was enough for some fairly decent piggies, maybe even a small braid or two.  People started to comment that it needed cut-- and I knew it needed it.  Long hair just didn't suit his personality, or our family, but I was loath to cut it.  Then Lawrence needed a cut, so they both went in.  This was not Mr. E's first haircut by any means, but for some reason I was hesitant.  Mr. E sat up in the barber's chair, let her put the cape on him, and held mostly still (for the first time) while he watched videos on Lawrence's iPod and his hair got cut.  He was such a big boy and made us proud.  And then he really was a big boy.  With his hair short and matching daddy's my Mr. E looked grown up.

It made me a little sad.



Sad because he didn't look so much like a baby any more...

Pre-haircut, by about a month
But more sad because he didn't look like Ethne any more.

matching haircut with daddy
I struggled to get used to the new cut.  It took me a few weeks to really put my finger on the reason it was bothering me.  It looked good on him and he was happy about it.  Then, one night, while I was checking on him and tucking him in before I went to bed, it hit me.  I cried.  He didn't have hair like his sister any more and that made me sad.  It wasn't like he had never had short hair before, he has been having his hair cut since just after his first birthday, but I had also never let it get quite so long before.

I think I can safely say that, after that night, I have accepted his new haircut.  It makes him look very handsome and more like the big boy he so very badly wants to be.  It makes him look like Mr. E.

I have learned that I probably shouldn't let it get so long again.  This monster called grief has it's way of sinking its teeth into so many aspects of life and I just never know when it is going to strike again.  But all the same, I couldn't live without it now, because to live without it would mean to forget Ethne and how she has touched my life-- and that is not something I am ever going to allow to happen.

Sunday, October 5, 2014

Surgery Prep

Before Baby J's pull through surgery I tried to prepare myself for the surgery and for life after the surgery.  I read about others' experiences, learned about the diaper rash and found some things to try to help with it, and got in touch with other HD parents.  But there are some things I wish I had checked up on and others that I'm glad I did.

In preparation for Baby J's surgery and subsequent hospital stay I packed a bag for myself, since I was the one that would be staying at the hospital with him.  I also packed a bag for Mr. E since he stayed with his grandparents most of the week.  I asked some other HD parents what they recommended I take with me.  I felt pretty well prepared for the hospital stay.  I found that the accommodations at the hospital were better than they were in the NICU.  There were shared showers for each wing of the unit, we had a shared room with a television in each half of the room, and a shared toilet and sink in the room, a pull-out chair bed, and every day a courtesy cart came up to the unit with free breakfast.  There was also a Ronald McDonald house a floor down that I was able to utilize a few times.


I wish I had called the hospital and asked about accommodations available to parents in the infant unit.  I also wish I had asked other parents what to expect during recovery from surgery.  Calling the hospital would have given me better insight as to what to pack and what they would provide for me and Baby J.  Had I asked other parents about recovery I would have been more prepared for some of the side effects of surgery I could expect, some of the stresses for me, and some of the requirements the doctors' would have for release.  I also would have been able to stock up better on supplies to combat the diaper rash immediately upon release, rather than having to take a trip to the store as soon as I got Baby J home.


In my bag for the hospital I packed:  enough clothes for the longest estimated stay, toiletries, lotion, hand sanitizer, towel, wash cloth, makeup, charger cables, my laptop, phone, pen and paper, some pre-packaged food, a few movies, pillow, blanket, slippers, my wallet, a water bottle, and my breast pump parts.

I was happy to have my own toiletries (the hospital had some, but nothing great), and my own pillow and blanket that made sleeping in the hospital chair/bed a little more comfortable.  My laptop and my own movies were really nice to have to keep me from getting stir crazy while staying in the same room for 5 days.  With the food I was able to avoid eating out too many times during our stay, avoid vending machine junk, and to also help out a few others with babies in the hospital.  I was also again able to pump breast milk for Baby J to have when he was allowed to eat, which I then donated to another mom who could use it when I probably wouldn't.

I wish that I had been aware that Baby J wouldn't get to eat until after his bowels began to function post-op.  I was quite worried about him being hungry and was frustrated that I wound up pumping longer than I had planned.  I wish that I had been warned about the potential for tummy upset once he was allowed to eat and the lovely vomit that ensued, I was scared for Baby J (there was a lot of it), and scared that the surgery hadn't really fixed things.  I also wish I had been told to stay on top of his pain meds and to not push weaning him off of them, I feel like I pushed weaning him off them too quickly in my haste to get him home and might have caused him some unnecessary pain.  I also wish that I had taken the advice of a friend who had spent much more than her fair share of time sleeping on a hospital chair/bed and taken an extra mattress pad to sleep on, I could have spared myself some sore muscles/neck/back.

I share this so I can remember in case we have a hospital stay in the future and also so that others in the same or similar situation can learn from my experience.

Sunday, September 28, 2014

Discomfort

Shortly after the accident I came to realize that grief makes people uncomfortable.  Those that associate with someone who is experiencing grief often don't know how to act or what to say.  Even now that I am in the thick of it it is hard to find words or actions to comfort, ease, or otherwise help someone who has just begun to grieve.  So many sentiments are so often repeated that they begin to fall on deaf ears, and others, though well meaning, can take too much effort to accept.

One such sentiment that so many so often use is "let me know how I can help," or variations of the same.  While I fully believe that those who say this do so sincerely, it often takes too much effort on the part of the griever to take others up on this offer.  When you are in the midst of a crisis of any kind you are bombarded by things that need done, emotions, and-- often-- well-wishers.  In any situation this is overwhelming, but when grieving it can be especially so.  I suggest just go and do, instead of offer.  I have had many experiences with such generosity.  For example, after I broke my arm I wasn't about to ask for help, but my mom, aunt, and a great friend all brought me dinners during the first week so I didn't have to cook.  They didn't ask or vaguely offer to do it, they said they were going to do it, and on which days, and then did it.  It was such a blessing and relief to have that help while I was trying to figure out how to do everything with one hand.  If you want to help choose something you want to do, when you want to do it, and then check with the person(s) that it will work for them.

It is also good to know that the people that are grieving are uncomfortable too.  From the outside looking in it is hard to know what to say or do, but it is the same on the inside.  It's hard to know how to respond to people, it's hard to know what to do in the situation, and it's hard to think ahead to answer many of people's questions, or how life is going to go on after the funeral (or other event) is over.  Sometimes the grievers meet new people and it gets uncomfortable again as these new people learn about the grief.  Other times situations arise that cause the grief monster to rear its ugly head and this can cause discomfort too.

Sometimes the best way to deal with all this discomfort is to just start talking.  Those of us who are grieving are not all that different from those who aren't plagued with this monster.  We want friends and companionship, it's just a little harder for us when people who don't know what to say avoid saying anything (or avoid us all together).  Some people don't realize they are avoiding someone who is grieving, and sometimes we don't realize that we are being avoided.  It is uncomfortable and difficult all around.  Just realize that a person dealing with grief is often more introverted and less likely to start a conversation and take the initiative-- they will probably thank you for it.

Another part of all this grief and child loss business that often makes people uncomfortable is how/if to talk about the lost child.  I realized, a year and a half ago, that I need to talk about Ethne.  I need people to know that she was is part of our family and is ever present in my thoughts and heart.  I came to the realization that not sharing her and her story with new people I may meet is like denying her, and I cannot deny her.  It seems that many times when I mention her to people, especially newer people in my life, they don't know what to say or how to react.  I often find myself telling people about my three redheads and I see the confusion on their faces as they look at my two boys, count heads, and can't figure out where I get the number three from.  Most people don't ask, but some do, I think most assume that the third must be in school or at home.  Others who know are still often awkward, not knowing what to say.  To be honest (this goes for me, not necessarily others) just acknowledging that she did indeed live, and then moving on would make me more comfortable than ignoring what I've said-- even a polite nod would be better than nothing.  Realize that, if the parents (and/or other family members) are talking about the deceased it is ok for you to talk about them, and to acknowledge them.

More than anything patience is the key.  Some days a grieving person will seem normal and happy and others we may not be able to get out of bed.  Be accepting and realize that, we really are fairly "normal" and have many of the same wants and needs as everyone else.  Be our friend, and realize that, just like you, things may be difficult or uncomfortable for the griever too.

Sunday, September 21, 2014

At the end of the day

At the end of the day I am tired and usually at the end of my rope-- patience is running low, children are cranky and uncooperative, dishes are piled up in the sink, and often Lawrence isn't home to help (managing retail often calls for unfortunate working hours).  But, somehow this is my favorite time of the day.

Mr. E Starts by picking up his toys while I pick up after Baby J.  Then the real battle begins, it's a fight to get him to go potty, a fight to get him up to his room, a fight to get him to take his clothes off, pick pajamas, etc., etc.  Sometimes I get a little short with him while we battle about these rather insignificant details, but after the battle comes the part that always makes up for it.  After Mr. E has taken care of his hygiene, changed into jammies, and has settled down a little from the day we sit in a rocking chair and read a story.  This is our time-- just Mommy and Mr. E.  Usually we read Curious George, sometimes it's a Junior story, or something else.  He snuggles his little red head into my shoulder, grabs a fistful of hair, and we read.  I often stop to ask about colors, shapes, numbers, animals, or other details (mostly in the pictures).  He answers my questions and also points out details he likes, as well as asks questions.  After his story Mr. E says his prayer, then crawls jumps into his stuffed animal filled bed.  Then we sing.  He gets 5 songs.  Nearly every night he chooses "I am a Child of God," "I Often go Walking," "Families Can be Together Forever," and some theme song from "Phineas and Ferb," there's rarely any variation.  Sometimes he sings along, but most the time he is content to let me do all the singing.  The last part of the night is even better than the rest of it combined.  This is when Mr. E climbs into my lap, wraps his arms around my neck and I sing "A Bushel and a Peck."  He gives me  an excellent hug, a kiss (on the lips), Tells me that he loves me, then climbs back into his bed as I turn out the light.

Once Mr. E is read to, sung to, and "in bed" it's Baby J's turn.  He doesn't put up a fight (yet).  He gets a new diaper, jammies, and some warm milk, then I also read to him.  His stories are much shorter and he doesn't hold still as well, but he also tends to grab a fistful of hair.  There are no questions and answers-- instead there's wrestling the book away from grabby hands that just want to pull it into his mouth.  Then we sing too.  Baby J only gets one or two songs and, you guessed it, "Bushel and a Peck" is always on the list.  We rock, snuggle, and I sing into his ear (which often makes him giggle),   then I kiss him about a dozen times, put him in his bed, and turn out the light.

Some nights I cry.  Every night I revel in the fact that I have been blessed with another day with these sweet, rambunctious, and smart boys.  Every night I take time to thank my Father in Heaven for the blessing of my boys and of the day we have had, and to ask for more days to spend with my Mr. E and Baby J.  I treasure this time I get to spend, one on one with each of my boys.  I am reminded of how special they are and this is the perfect ending to each of my not so perfect days.  No matter how frustrating, busy, productive or unproductive the day, at the end of it I am always grateful that it happened.

Sunday, September 14, 2014

Do you remember?

Mr. E, do you remember Ethne?  Do you remember how she used to ask to hold you?  Do you remember playing peek-a-boo and tickles with her, and the way you would smile and giggle at her?  Do you remember how she would help you with your binki when you'd cry, or how she'd play "this little pig" with you?  Do you remember splashing in the tub with her or snuggling in her bed while daddy read you both stories?  Do you remember her coming to see you in the hospital, the way she let us lay you on her lap while she ate pretzels?  Do you remember?






I do, but you probably don't.


Sunday, September 7, 2014

HD FAQ's

Most people have never heard of Hirschprung's disease and that means that they often have lots of questions.  Here's a few of the questions we get asked most often (some of this may be a bit of a repeat from other posts).

1.  What is it?
Hirschprung's disease is a condition that a person is born with that effects the function of the intestines in that the ganglion cells that move food and waste through the body failed to completely develop.  I recently learned that it can be described as a disease or a birth defect-- when it happens randomly and cannot be connected to genetics in any way it is considered a disease, when it can be linked to genetics, i.e. it is hereditary or occurs because of another defect or disability such as Down's Syndrome, it is a birth defect.  Baby J's Hirschprung's could be either (there is a small family history).

2. How much intestine was effected in Baby J?
A lot of other parents I have talked to know how many centimeters or inches of their child's intestines were removed, I don't.  I do know that he lost his rectum, all of the sigmoid colon, and about an inch of his descending colon.

3.  Will he have to have more surgeries?
The hope is that he will not need surgery again, but there is always a chance that something could happen that could make more surgery necessary.  Among the possible scenarios in which he might need surgery are severe enterocolitis, severe constipation, or a build up of scar tissue that causes a stricture.  As of right now, though, things look really good.

4.  How is he doing?
He is doing really well.  We started solids a few months ago and have learned that we have to introduce new foods slower than we did with our older kids and there are a lot of foods we need to avoid so that he doesn't get constipated or sick (rice, pears, peaches...).  He is still nursing and seems to prefer nursing to solids, though he eats those well too.  Despite our best efforts Baby J does occasionally suffer from some tummy discomforts such as gas pains and occasional constipation, but we work through these as they come.  He has been a little delayed on some physical milestones, but when you spend a total of three weeks in the hospital basically immobilized that will happen.  With a little extra work he is catching up on these milestones.  He is overall very happy and healthy and has two, very sharp, teeth.

5. What about the diaper rash?
His diaper rash is under control as long as I don't run out of my magic diaper duty supplies.

6. Is he all better now, will this effect him the rest of his life?
The answer to this one is a little complicated in that he is better in many ways, but this will probably effect him in some way for the rest of his life.  When you lose a major organ (or part of one) there are always complications.  Many times there are scars, sometimes there are dietary restrictions, risks of infections, or other complications.  Baby J faces most of these.  He has the scars on his tummy from the surgeries, he has scar tissue where things were reconnected that could build up and cause issues, he will most likely have food allergies/intolerances that will stay with him his whole life, he may never have "normal" stools, and he is always at risk for enterocolitis.  When he is older, probably about 3.5 or 4, and ready to potty train we will work with a group of doctor's to help him learn muscle control and possibly put him on some special diets to help his digestion and pooping.  There's a good chance that he will have to be on some kind of fiber supplement or laxative for his whole life to avoid issues like constipation.  For now, he is doing very well and, as long as we are careful about what he eats, he has few problems doing his duty.  Occasionally he will get backed up and we have to give him an irrigation (enema), but that is the exception, not the rule.  So the simple answer is, no, he is not all better, and yes, this will effect him the rest of his life.

I hope this can help answer any questions you, our readers, may have.  If you ever have questions about Baby J and his HD please ask.  I may not have all the answers, but I am always learning more about HD and will find the answers as best I can.


Sunday, August 31, 2014

Ethne's Headstone

Ethne's headstone was placed at her grave about a week before Memorial Day 2012.  Since then we have posted many pictures of it, but have never really talked about it or the images we chose to have engraved on it.

We have seen a lot of different headstones with a lot of different styles, stones, engravings, and images.  We wanted it to be special and to memorialize our Princess, but also classic.  We decided on grey granite because it's easy to keep clean and less likely to crack or break.  We also didn't want something high profile so we went with a flat stone with a slight angle to it.  We wanted anyone who saw it to be able to get a glimpse into the personality of Ethne.  Obviously we had her name, birth date, and death date engraved on the head stone.  We wanted there to be a vase or other receptacle for us to put flowers or other decorations in, so there is a hole for that at the top of her headstone.  We chose to have an elephant for obvious reasons-- Ethne and her "ephant" were inseparable-- but also because elephants never forget, and we will never forget.  The minion was also twofold in that it comes from one of her favorite movies and that it represents her personality so very well, she was so loving and willing to help, but also playful and mischievous.  There's a tiara, because she is and always will be our princess.  Last but not least is the inscription "Daughter of a King."  This inscription also has two meanings for us.  The first is superficial and plays into Lawrence's nickname for her-- Princess.  The second is more meaningful and comes from a beautifully written and illustrated children's book by the same title.

To summarize the story:  There is a farmer's daughter whose clothes are old and patched, she plays with the other town children and some of the richer children tease her, but she doesn't let this get to her because her parents have taught her that she is a daughter of the King and that he loves her, no matter what.  As she grows she has other experiences that teach her about being a daughter of the King and of how she can go to the castle to live with him some day.  She eventually marries a young man who has also been taught that he is a son of the King and they work together to be able to live in the King's castle one day.  They have children of their own and raise them in the knowledge that they are also children of the King.  Finally they grow old and take their journey to the castle.  The journey is hard, but they have each other for help and support.  Along the way they meet others on their way to the castle and they help these others along their journeys.  Eventually they make it to the castle and the King greets them, by name, with open arms and welcomes them home.

It is such a beautiful and profound story that teaches of each person's worth and of our mission here on earth in such a way that even children can understand.  It was one of Ethne's favorite bedtime stories and made even Lawrence tear up when he read it to her.  In so many ways this story and inscription remind us of our Princess.  She was so kind and loving to everyone and she knew that she was a princess.  It also reminds us that, not only will our father, the King, welcome us with open arms when our journey is through, but also that Ethne will be there, a crooked grin on her face, and her arms wide open and ready to give us great big hugs.

We hope that all those who see her headstone get at least a small clue of who she was is.

Sunday, August 24, 2014

My Nemesis

The stairs...

Anyone who knows me knows that I have a bit of a clumsy streak.  I blame this on genetics.  Stairs and I have never been the best of friends.  I fall down them, trip up them, and otherwise don't always get along with them.  Why this didn't cross my mind when we were looking at (and purchasing) a house I'm not sure, because things might have gone a little differently had I thought about my never ending conflict with stairs.  But it didn't really cross my mind and we purchased a house with a lot of stairs.  Don't get me wrong, I love our house, and I love our ward and neighbors even more-- I just have a love/hate relationship with stairs... all of them.

About a month ago I was carrying a pack and play down the stairs and took a wrong step, on the second step down.  I took a not so nice bouncy ride down the stairs and found myself bruised and walking funny for a few days.  To be honest, I feel lucky that it took me so long, while living in our house, to take such a tumble down the stairs.  I was also feeling lucky that I wasn't carrying Baby J at the time.

Last Friday (Aug. 15) I had another encounter with the stairs that did not end quite as well.  I was doing something that wasn't so smart.  I was trying to get some things cleaned and organized and in the process I had found several items that needed to go to the basement.  I didn't want to make a whole bunch of trips up and down the stairs so I was stacking stuff on the top step to the basement.  As I did so I leaned over the baby gate at the top of the stairs.  I thought to myself that I shouldn't be leaning over the gate like I was.  Just as that thought left my mind, said baby gate gave way and I went with it, head first, down the stairs.  Baby J and Mr. E were playing contentedly in the family room, so neither of them were in danger of getting hurt or coming along for the ride.  About half-way down I heard a lovely snap and before I knew it I was in a painful heap at the bottom of the stairs.  A quick self assessment told me that my head and neck were both fine and that the snap had come from my right arm.  I sat myself up, let loose a scream or two and gingerly placed my obviously broken right arm on my lap.  I found my phone a few steps up as Mr. E made his way down the debris littered stairs to me.  "Mommy, you fell.  Mommy, are you ok?  Mommy, you're crying..."  Yes, yes, yes...  My possessed phone was refusing to make an outgoing call.  I shut it off, "Mommy, your phone died."  Turned my phone back on and hefted myself to my feet with another scream.  Got to the top of the stairs and on the floor near Baby J, phone finally rebooted.  Try to call Mom, no answer, great.  Dad, no answer, shoot.  Try to call Lawrence at work, call is interrupted by Dad returning my call, possessed phone freaks out, hang up.  Dad calls back, "I fell down the stairs and broke my arm come take me to the ER."  Hang up, call Lawrence.  He feels helpless, tells me to call Sarah.  Call Sarah, she comes right over.  Meanwhile Baby J is upset because I'm upset so I somehow finagled him onto my lap.  Sarah made it over with another neighbor hot on her heels.  Sarah took J and started getting him food, second neighbor got E's swim trunks and took him to Sarah's house where there was a party going on, complete with a water slide.  Then the husbands showed up, and they gave me a blessing.  This helped calm me some.  Finally Mom and Dad showed up.  Mom took me to the ER, dad stayed with the kids.  Then it got boring.

We waited for an X-ray to tell us how bad the break was and if it would need surgery or could just be set.  Then we waited for the orthopedic doctor to come set it.  Some time during the waiting Lawrence got an employee to come in so he could leave work and be with me.  Then Mom got a call asking where my baking soda was, my youngest brother had been stung by a wasp, three times...  Mom left to attend to swelling post stings.  The orthopedist finally came with a team of doctors to put me out while he set my arm.  According to Lawrence I kept telling Mr. E to get off me, that he was hurting me, during the procedure.  They set the bone, splinted my arm and we waited some more, this time for the sleepy drugs to wear off and for the doctor to discharge me.  We didn't get home until 1 am...

On Monday I went back for more X-rays to see if the bone had shifted and to cast my arm.  Fortunately it was a clean break, it set well, and didn't shift, so I didn't need surgery!

Lesson learned, don't lean over baby gates.  I can laugh at it all now, so you can too.

Friday, August 22, 2014

Life With a Stoma

This is going to be a slightly boring post for anyone who doesn't want to know about stoma care, so if you don't feel free to skip it, but I feel like it needs to be made.

I meant to make this post while Baby J still had his stoma.  I was going to make a whole video and it was going to be awesome.  But I'm not that good, so it didn't get done.  April came around faster than I thought it would and I didn't have hands to help me make the video (Lawrence was working crazy hours earlier this year).  So I'll make the post now and include lots of pictures.

When a person has as stoma they have to wear an ostomy pouch to collect the output from their stoma.  There are many different types of stomas and they can be just about anywhere on a person's belly.  Baby J's stoma was called a double barrel loop stoma because both the functioning stoma and the mucus fistula (the non-working part) were in the same place, attached on one side and looped together.  This was easier to take care of than some other types of stomas because the two pieces were together.  Some people have two separate stomas, the working one and a mucus fistula, that are sometimes close together and sometimes not-- occasionally these require two ostomy bags.  But I'm not here to talk about stomas etc. just to talk about Baby J's stoma and how we took care of it.

Before we left the hospital the nurses showed us how to take care of the stoma, there was also a video we had to watch.  Then the nurses placed an order for ostomy supplies with a medical supply company for us.  I wish I had asked more questions about what they were ordering and why because when our first order came it had supplies in it that I didn't know how/want to use and I was confused about how much of everything we had received.  I wish I had taken more time to talk to the nurse, asked her what she was ordering, how much, and why she was ordering the things she was.  This would have saved us some money and some confusion in the first few days home with Baby J.

The first few days (maybe even week) after we brought Baby J home from the hospital we were going through a lot of ostomy pouches, like 2 or three a day.  It seemed like nothing we did worked to keep them from leaking.  The hospital sent us home with a whole box of pouches and supplies to get us through until our order of supplies was delivered.  It turned out that the pouches we were using were too small for our chunker baby.  I went to the internet for some help and reached out to other parents of children with HD.  They were super nice and gave lots of suggestions to try.  We tried some of their suggestions and finally found a combination of tricks that worked well for us.

Here is a step by step of what we did to keep pouches on Baby J and the products we used that worked well for us:

Prep:
You may need to restrain the child:  the easiest way to do this is to have another adult to help hold down arms and legs, but you can also use a blanket or two to swaddle arms and legs.  You do this by getting a larger blanket (or two small blankets) and laying the child on them as if you are going to swaddle them with a corner on each side, then pin one arm next to the child's side, wrap blanket over it, then tuck the blanket corner under the child, do the same on the other side.
Cut a hole in the wafer that will fit around the stoma.  We were lucky in that Baby J's stoma didn't change size much so I made a template from an old wafer's paper backing that I was able to use over and over.  Then warm the wafer so the adhesive will form to the skin well-- if you are using a one piece system be careful that your heat source isn't too hot or it will melt the bag, this isn't a problem for two piece systems-- I put the one piece system in my bra or sat on it to warm it.



1.  Remove the old bag and wafer, if you use a one piece system they come off together, sometimes on a two piece system the bag and wafer will come off separately.  Unfortunately this often makes kids/babies cry because it's like pulling off a big bandage.

2.  Clean the area around the stoma with a gentle, lotion and scent free soap, water, and a lint free cloth.  We used Johnson and Johnson's baby wash.  You have to scrub a little to make sure things get really clean and be sure to rinse well and then get it thoroughly dry.  This was easiest for me to do in a bath.

3.  Spread stoma powder on the area that will be covered by the wafer/bag.  The stoma powder will collect on any remaining adhesive residue, this will appear slightly raised and the stoma powder won't easily blow away.  Rub these areas vigorously with your finger (I wore gloves for this part) to get all the residue off his skin.  This ensures a good seal between the new wafer and the skin.  Rinse with clean water and dry.

4.  Warm the skin by placing a warm pack or hand over the stoma and surrounding skin or using a blow dryer.  This makes the adhesive on the wafer mold to the skin better.

5.  Apply cavilon skin protectant to the area that will be covered by the wafer, I used the wipes, but there is also a spray available.  Do this in at least 3 layers as this will cause "crusting" and make the wafer stick well-- allow each layer time to dry before applying the next.

enjoying the warm pack
6.  Apply stoma paste around the base of the stoma like a caulk.  We used a syringe to make sure the paste went on in a thin ribbon and was easy to manage.  Also put paste around the hole on the wafer that will go around the stoma, after peeling off the paper backing.

7.  Place the wafer and/or bag over the stoma making sure there are no wrinkles in the wafer.  I used a q-tip around the stoma to press the wafer down and make sure I got a good seal.  Then warm the bag/skin and put gently pressure on the wafer to ensure a good stick.

This system kept bags on for up to three days for us.

The only other trick to keeping bags on, that we found, is emptying it often.  I emptied it at every diaper change-- more often if it filled with gas between.

My list of stoma care essentials:

Hollister one piece bag and wafer system
Stoma powder
Stoma paste
Syringe
Nitrile gloves
Johnson's baby wash
Lint free gauze
Blow dryer
Wash cloth
Water
Cavilon wipes
Q-tips
Scissors
Marker (to trace the template onto the new wafer)
Changing table
Blankets
Another adult

Saturday, August 16, 2014

On a completely unrelated note...

I got in a fight with a flight of stairs...


...I lost, or rather my right arm did.

As of right now they don't think it will need surgery, but we will find out for sure on Monday.

Wednesday, August 13, 2014

A Post I Have Been Thinking About for a Long Time, Featuring Robin Williams

When I was about 15 years old I earned my Eagle Scout award.  My mom wanted me to get it before I turned 16 because she was worried that if I waited that long I might not get.  Upon completion we arranged my Eagle Court of Honor and sent out some announcements to family and friends.  Unbeknownst to me, my mother had found the addresses of a few other people to send invites to.  I believe it was right after my court of honor that my mom came to me with a stack of letters to open.  The majority were cards of congratulation from all of the living US presidents - including Bill Clinton (who was president at that time).  Even though I haven't agreed with all of them, I truly still appreciate their responses, even of they were generic.  But there were two others that were included that I couldn't wait to brag about to my friends.  One was a letter from Dave Thomas - the founder of Wendy's, and the other included an autographed picture that said, "To Lawrence, Congratulations!  -Bob Hope" I was hoping to put a picture of it on here but it's still at my parents house apparently.  Growing up I loved listening to comedians.  I would retell their jokes and learn their routines.  I even remember doing a pantomime from Red Skelton for a talent show in Elementary School.  Skelton and Hope were hands down my two favorites.

In college, I began making it a habit to get the autographs of performers I was able to meet.  People I admired like Byron Stripling, Brian Bromberg, Wycliff Gordon, The Bar-J Wranglers, and others.  The wall in our bedroom shows about half of them right now.

When Melissa was pregnant with Ethne, we attended a Brian Bromberg concert at BYU-Idaho.  One of the things we asked him to sign was a poster for our unborn daughter.  He very graciously did and we were proud to have gotten Ethne her first piece of "Swag."  We keep that poster in her memory chest.

After she died I was looking for ways to help keep her memory alive, while trying to bring some happiness into our home.  I found a website online that had a list of celebrity addresses and decided, in secret, to take some of the case sleeves of Ethne's favorite movies and get them autographed in her honor.

I came up with different variations of a letter that I sent out to each actor (trying to personalize each one) and included a return address so they could send them back.  I don't remember who responded the fastest but I think it was Zachery Levi with our Tangled sleeve.  It even said, "Love & Blessings.  You'll be missed."

Shrek 2 was returned because the address for Mike Meyers was incorrect.  Muppet Treasure Island was also returned with a card thanking us for the support, but that Mr. Oz does not respond to personal correspondence.  At least they sent something and gave us back the sleeve.  We were grateful for that.


We also Got back Cars with a signature from Larry the Cable Guy, who also signed it as Mater.  We really thought that was neat.


I think Melissa's favorite had to be from Jodi Benson - the voice of Ariel.  She not only signed the sleeve, but included an additional signed picture of her and returned the letter I sent her.  At the bottom of the letter she said, "I'm incredibly sorry for the loss of your precious daughter.  I can't imagine... May God comfort you both daily - God Bless."  That personal touch really meant a lot to both of us.


The one that I think I was most excited about was our sleeve from Robots.  This is a movie that Ethne loved so much she scratched it and made it unwatchable when she tried to put it in the DVD player herself.  I planned on sending it to a couple actors from the film including Ewan Mcgregor and Drew Carey (another one of my all time favorite comedians), but out of fear of losing it I kept it after one signature - Robin Williams.  The movie sleeve was signed along with another picture and included a generic letter from his office.  I don't know if the signature is really his, but I also won't allow anyone to convince me otherwise. You see, Robin Williams was another big comedic influence growing up.  Although I was not familiar with how vulgar he could be, I did know that he had a personality that could make anyone laugh.  When I was little I remember waking up in the middle of the night and laying down on the floor by my parents' bed.  To help calm me down from a bad dream, or something, they would turn on Nick-At-Night (It was probably so I would just let them sleep).  I remember two shows that I would watch - Mr. Ed, and Mork and Mindy.  Mr. Williams was one of the first celebrities I could identify.  I remember hearing once that he could be hard to work with on a movie because he was always making everyone laugh.  I remember thinking that I wanted to be like that-- someone who made everyone around him happy.


Upon hearing about his death I was quite saddened.  When I found out it was a suicide, it hurt me.  I don't know what he was going through and I am glad that I don't have to deal with the same pains and sufferings he did.  I view this ending as the greatest tragedy to a life that I admired.  Again, I don't know his whole story, but what I did know I enjoyed.

As I write this next part, I want it to be understood that I personally feel that suicide is never the right path.  It is tragic, selfish, and, if you look at the eternal perspective, it is not a simple way out.  It does have consequences.  That having been said, since Ethne's death I have seen suicide from a different perspective.  Be careful judging someone who chooses this path (Matthew 7).  We don't know what the Lord knows.  While I still know that it is wrong, I also know that God loves us as his children.

After Ethne's death we joined a grievance group that was headed by a man who's boy had committed suicide a few years before.  He talked about suffering with depression that was so strong he had contemplated it himself.  He said that going through that gave him more insight into what his son was going through.

Later on, I met someone who told me about a friend who committed suicide while preparing to go on a mission.  Even though it had happened a little while before, I found myself praying for that family and hoping that they had found strength in the gospel.  I then thought about that boy's situation and prayed for understanding on how God would deal with this situation.  I still don't know, and am very grateful for a Heavenly Father who is both just and merciful who does know, but the following quote did come to my mind:

“The Prophet Joseph Smith declared—and he never taught a more comforting doctrine—that the eternal sealings of faithful parents and the divine promises made to them for valiant service in the Cause of Truth, would save not only themselves, but likewise their posterity. Though some of the sheep may wander, the eye of the Shepherd is upon them, and sooner or later they will feel the tentacles of Divine Providence reaching out after them and drawing them back to the fold. Either in this life or the life to come, they will return. They will have to pay their debt to justice; they will suffer for their sins; and may tread a thorny path; but if it leads them at last, like the penitent Prodigal, to a loving and forgiving father’s heart and home, the painful experience will not have been in vain. Pray for your careless and disobedient children; hold on to them with your faith. Hope on, trust on, till you see the salvation of God” (Orson F. Whitney, in Conference Report, Apr. 1929, 110).

The Atonement is for all of us.  I don't know what the eternal destiny is for Mr. Williams, all I know is that he and his family are in my prayers.  I pray that they may all come to know the truth.  I even pray that Ethne might even have the chance to help guide someone who was influential to me from my youth.  Many of you, if not all of you, prayed for us when we were first suffering our loss.  Take a moment and pray for the Williams family and any others who are suffering losses and affliction.  They need help just like we did.  I testify to you that it is important.  Never in my life have I felt the strength of the prayers of others like I did when Ethne died.  I literally felt that faith carry us for a long time.  Only 2 other times in my life have I felt that and neither of those times were the feelings as overwhelming as then.

To all of the celebrities that we contacted (or at least tried to) we thank you for your talents and that you shared them with us.  A very special that you to those who responded.  We only had one letter that we never heard back from, and for all we know it was because by the time he was able to get back to us they were no longer forwarding the mail from our apartment we left a little over a year ago.  And to Mr. Williams, we pray for you as we say farewell to someone who I still maintain is/was the greatest cartoon voice artist ever!











-Lawrence

Saturday, August 9, 2014

Anything for a Friend +

We have had a pretty incredible weekend, it started on Thursday.  It started with Lawrence miraculously getting two WHOLE days off work, in a row!  He had some gigs at a couple state fairs with a band he has been playing with for a couple years now and needed some time off work for those, as well as to just have some time off with family and to relax.  It was so wonderful to have him home, to spend time with him, to relax, to be together.  Mr. E was so happy to have his "Gru" (each week we get new cartoon character names) home to play with, snuggle with, and otherwise terrorize. I was happy to have extra hands with the boys and Lawrence was just happy to not be at work.  Thursday we went bowling with my brothers and grocery shopping as a family, that night Lawrence headed to the Weber county fair to play with his band.  I stayed home with the boys so they could nap.  Friday we did some laundry, some cleaning, and some packing before heading off to the Salt Lake county fair for another gig.  We all went this time and had fun listening to the band's music and visiting some of the booths, Baby J even got his first (microscopic) taste of a snow cone.  Then it was home to unload musical instruments and load the stroller and bags before heading off to Ogden.  We spent the night in a hotel and had a lot of fun watching Mr. E try to jump from one bed to the other and run around the room.  Then Saturday morning we made our way to Weber State campus bright and not too early for a 5k.

About the 5k:  About two months ago an angel mommy that I'm Facebook friends with posted that she wanted to participate in the Anything for a Friend Fight to the Finish 5k.  She wanted to create a team in honor of her angel and needed at least 25 people to make a team.  We joined the team.  I had been toying with the idea of doing a 5k and getting to meet this angel mommy, Ashley, in person was the icing on the cake for me.  I have been following Ashley's blog for a few years, since before we lost Ethne, and have  admired how she and her husband have handled the tragic loss of their daughter with faith and enduring.  I was looking forward to the event and to meeting and connecting with another angel mom.













The event started with an explanation about how Anything for a Friend was started, what they do, and why we were there.  Then there was a balloon release and the "run" started.  Along the route they put up posters with pictures of the people each team was there in honor of.  Many were cancer patients or survivors, some were for other loved ones, and a few were teams that just wanted to help.  We loaded the boys in the stroller and set about the 3.2 mile walk with a very large group of people, with a team of people we really didn't know.  Ashley and her family were so nice and made us feel welcome, and the kids had a lot of fun running part of the route together.  As we walked I thought about Ethne and how we are fighting to our finish so we can be with here again, I thought about Ashley's angel and her fight, I thought about Baby J and his fight with HD, and I thought about little Ethan-- who is still fighting his leukemia.  They are all heroes in my book and I am grateful that my life has been touched by each of them in one way or another.

While we walked I also thought a lot about answered prayers and blessings, as we just had some big ones fall into our laps...

Earlier this week we received a hospital bill for Baby J's NICU stay.  I won't go into specifics, but let's just say that it was big.  Our insurance for the 4 days of last year Baby J spent in the NICU wasn't very good insurance.  They payed their max allowed amount, but this policy had no out of pocket max and their portion was only drops in the bucket of 4 days worth of NICU expenses.  I was panicking.  But we did apply for some help through the hospital group that runs Primary's and were waiting on a decision, I was told it would probably be made by Friday.  So Friday I called to find out what had been determined.  The man I spoke with on the phone was very nice and told me that a decision had been made that morning.  He asked if I was ready to hear our new balance, I looked for a pen.  He waited patiently while I hunted a pen down, when I said that I couldn't find one he said "I'll just tell you, it's a really easy number to remember."  He then informed me that our entire debt had been forgiven.  I couldn't believe it.  This huge bill, that we would have been paying off for years, had been taken care of.  A huge weight lifted off my shoulders, I was so happy and relieved that I was crying.  Our prayers were heard and answered, we had been immensely blessed.  I am so grateful for such charitable hospitals that took care of my baby, and for a loving Heavenly Father that gave me faith that everything would work out.

I am feeling so thankful that we were able to have this weekend to spend time together and to reflect on so many blessings.

Monday, August 4, 2014

Big Brother


I remember when Mr. E was born.  In the hospital Ethne was more concerned with eating pretzels than her brother, but she let us lay him on her lap to take a picture.  After we brought him home Ethne slipped easily into the roll of big sister.  She wanted to hold the baby, kiss the baby, and help with the baby.  She would fetch diapers, give him his binki, play with him, and just wanted to be the best big sister she could be.  Ethne loved her baby so much.





When Baby J was born Mr. E also visited in the hospital.  He also wasn't sure what to think of this new thing.  He didn't want to hold Baby J and he couldn't figure out why mommy kept trying to get him to.  He was also a bit jealous, whichever parent was holding Baby J, Mr. E wanted to be held by that same parent.  He kept climbing up on the hospital bed to be with me, if I handed Baby J off to Lawrence Mr. E would climb in his lap.  He did try to share fruit snacks with Baby J, which was very sweet.  Then Mr. E didn't get to see Baby J for 2 weeks because he wasn't allowed in the NICU (flu and respiratory season).  Splitting the time was so hard, but that's a whole other can of worms.  Mr. E stayed with his grandparents and was very well cared for, but it was hard for him to understand where and why mommy and daddy were all the time.  After we brought Baby J home Mr. E really wanted nothing to do with him.  We tried to get Mr. E to hold Baby J, to hug him, kiss him, play with him... Mr. E just wasn't interested.  For a long time Mr. E just played around Baby J, barely acknowledging his existence.  Rarely he would surprise me by asking to hold Baby J, or giving him a kiss.  In the last month or so Mr. E has started to help with Baby J, bringing him toys, talking to him, even holding him sometimes.  The other night I was putting Mr. E to bed and Baby J was with us, I sat Baby J next to me so I could give Mr. E a hug and kiss.  Baby J tipped over and start crying.  Mr. E was immediately concerned and wanted to kiss Baby J's bonk better-- made me tear up a little.  He has really started to step into the roll of big brother and it makes me so happy.  I so look forward to the day that they play together, fight, make massive messes, and lots of noise.

It makes me a little sad that Mr. E never got to that point with his sister, that he hasn't known the joys and frustrations of a sibling yet.  But he will, with Baby J.  I hope that they will enjoy each other more than they don't, that they will be best friends and stick up for each other.  I hope that they will learn to embrace other siblings they may have and know that they are stuck with each other forever and that they will love it (or at least learn to).  I am so thankful that Mr. E has accepted Baby J and is starting to be his big brother.

Monday, July 28, 2014

Diaper Duty

As I'm sure you can guess, we change a lot of diapers around our house.  We did get Mr. E *mostly* potty trained, so that has cut down on our diaper usage considerably, but Baby J still requires a change about every 2-3 hours, except at night.  That adds up to roughly 6-8 diapers a day (sometimes more).  So I thought I'd share our diaper duty essentials, in case anyone was wondering.

1.  I swore with our first two kids, that a changing table was unnecessary, the floor was a great place for changing diapers.  On the floor I didn't have to worry about them falling off anything, the floor or a blanket was relatively easy to clean if there was a mess, and it was cheaper.  When I was pregnant with Baby J I decided he should have a dresser, so I shopped some yard sales.  I found one for an awesome price, and it happened to be a changing table/dresser in one.  Boy am I glad we have it!  Changing ostomy bags on the floor would have been a serious pain and doing it on the bed/couch/crib would have been messy.  The changing table is so nice because I don't have to bend over or get down on my hands and knees to change all the diapers and everything I need is right there, nice and handy for me to grab.





2. I love huggies diapers.  I'll admit, I haven't really experimented a lot with different brands, but when you find something that works well for you why mess with it?  Plus, it's what the hospitals all used, so it has to be good, right?  I like the snug and dry and the little snugglers (I know snug and dry got a bad rap a little while back and there was a recall, but I've never had issues with them).  They have great elastic waistbands and leg bands that keep stuff in and they are super absorbent, bonus that Mr. E likes the Mickey Mouse designs on them.







3. I made my own wipes when Baby J first had his surgery, but the second roll got mold on it while I was using the first roll, plus they really weren't any cheaper than buying in bulk.  So I checked out a few different types of wipes and went with the simply right wipes from Sam's Club.  These wipes are a good size to keep your hands clean, have a texture to them that helps with scrubbing power, aloe, and no alcohol or fragrance so they don't burn.  These wipes have worked very well for me and are a good price.











4.  I mentioned, a few posts back, the combination of items that I found to help keep diaper rash at bay (I also mentioned that I didn't want to endorse certain products, but I love this stuff so much that I wasn't to shout it off the rooftops).  I tried lots of different diaper rash creams and remedies before finding this little beauty and I tell you, the package doesn't lie.  It says that it will reduce redness in 1 diaper change, and it does!  There is magic in this diaper cream.  Since finding it I have used a few other creams when I ran out of balmex and nothing has done as great a job as the balmex.  My nearest walmart has had packages with coupons on them, but you can print a coupon for it here.


 5. Last, but not least, is the magic that is stoma powder.  You have to buy this little beauty from a medical supplier, and if you want insurance to pay for it (it ranges in price from $7-$200/bottle) you need a recommendation from a doctor.  I ran out of it for a few weeks about a month after Baby J's surgery and learned what this stuff really does for him.  When I was out of stoma powder I made sure to get his bottom dry before applying the cream, but he still developed a small rash.  The stoma powder absorbs moisture and works some additional magic in a partnership with the cream.  For a yeasty rash I use nystatin powder in place of the stoma powder, it does its job, but not as well as the stoma powder.  If you can't get a dr. to sign a note for stoma powder I've heard that corn starch can be a pretty good substitute.

These are my HD diaper duty essentials.